Recurring Fever in a Child – Periodic Fever Syndrome

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1. I thought I would tell everyone that my son had Periodic Fever Syndrome when he was 2 years old and he went to see a Pediatric Rheumatologist named Dr. Catherine April Bingham at Hershey Medical in Pennsylvania. In my opinion, she cured my son. She decided to give him small doses of Prednisone and it stopped the fevers 100%. My son is now going to be 14 and fever free. Reading your stories seems like I went through all this yesterday. I know exactly how everyone feels.

   My son would get very, very high temps/fevers every two weeks and they would last 3 days. We could mark the calendar when they would come every two weeks on the dot! This went on for months until we found Dr. Bingham.

   My son also had other odd symptoms as well. They were – He was always very, very thirsty, he would would always suck in his stomach really far, then pushing out really far. (Very fast, several times over and over again). Also, noticed when I laid him down to sleep at night he was still doing this when he was laying down, he also showed signs of sensitivity to his legs / arms. Sensitive at times when putting his arm in his shirt, would say “boo boo” to where I was holding his arm. Same thing when I change diaper, where I would hold his legs up, he would point to leg and say “boo boo” where lightly holding his leg. Not sure if anyone else’s child experienced any of these odd symptoms, but thought I would mention it.

2. Thank you so much for sharing your experience. My 10 months old baby probably has this condition, the fever pattern is every 2 weeks ? i am scared and concerned….We are from Romania and your post was encouraging, since i haven’t found similar experiences written in romanian language… How is your boy feeling now?

3. Hey guys, my son been going through this since he was 2 years old, right now he is 8 and as you said it’s kinda slowing down and being more random. One thing we noticed over the years that he doesn’t get sick “other sicknesses” as the other kids, if it wasnt for the fever he is super healthy!
   Endless blood work, xrays, and tests with no answers it’s hard but knowing your kid is not alone and he is going to be ok helps.

   1. My daughter started having high fevers at the age of 2. They came around like clockwork and would get as high as 105.6 degrees. Diagnosed with Periodic Fever Syndrome. She had these fevers up until age 6. They got closer and closer together and then just stopped. After 1 yr of constant acupuncture treatments the fevers stopped. Then age 7 the fevers returned. They are random and not clockwork but they still get very high in temperature. She is healthy otherwise. Never really sick so I think the fevers help eliminate other illnesses. The acupuncturist thinks it’s internal heat from digestive stagnation and therefore building up toxins in the digestion system

4. How do we know if it is Periodic Fever Syndrome? My 6 month old had a fever of 103 four weeks ago, came on suddenly, no other symptoms, gone in two days, the pediatrician said it was a virus. Then just this past Wednesday (exactly one month to the day later) she got the exact same thing, 103 fever out of nowhere, no other symptoms except really didn’t want her bottle, gone 36 hours later, pediatrician said it was a virus. That’s only two now, could they still be viruses? She just started daycare, she also had a shot exactly 4 days before both fevers. Do I just wait and see if it happens again next month? Thank you!

5. My daughter would get fevers every 6 weeks when she was 9 months old, then they stopped when she was 6. Now they started up again at the age of 11. I could count down to the Exact day she would get a fever! No one believed me. I’m so upset this has come back, I thought she outgrew it!!

6. Very interesting. I was just googling info on fevers. My son is 6 and started kindergarten however he was in a preschool before that but he gets a virus every 4-6 weeks and it has high fever and no other symptoms. He may complain of throat the first day but then no more. He always test negative for strep and flu and so on we go home to let it run it’s course. I will be talking with his dr Monday about this bc we are currently on day 4 if high fever. His normally last 5-6 days. Thank you again for posting this.

7. Hello Linda – This story was so helpful. When my son was born in May 2016 after birth 2 days later we where back in the hospital due to my newborn having a fever right after birth. We stayed in the hospital for about a week until testing and blood work was done. Everything came back normal and sent us home. Since then he has had a fever almost every other month. Now with the flue season it’s monthly now. I’m so worried and so concern I know something is wrong, I feel it. Reading this post gave me hope and realized I’m not pushing hard enough to get further testing done. Thank you and I feel every single mother on this blog.

   1. Selene, have you done further investigations? My baby has 10 months and we are dealing with fever each 2 weeks…it really scares me ? it was flu season so doctors didn’t get alarmed so far, but i have a strong feeling that is something else … We are living in Romania, and i couldn’t find similar experiences written in romanian language, so it is really encouraging to follow yours

8. I don’t know if this is even still active, but I just wanted to say thank you. My daughter is 2 and we’ve been battling these random monthly fevers about 7 months now. Doctors have yet top run any tests. I think I’m going to take her to a specialist and begin charting.

   1. Yes, this is still active and we are still experiencing fevers with our 9 year old son. It’s been a long journey.

9. My 3 year old son started with fevers in April of this year. After being told continuously it was just viral, I wrote down all of the dates of sickness and it had been every month for 6 months. We are now being referred to 2 different specialists for periodic fever syndrome. I hope to get some answers soon. Thank you for your post, it’s reassuring that there may be an end to this. It’s disheartening watching our kids go through this so often.

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11. This blog post has been somewhat reassuring for me. My son will be 2 in 2 weeks. He got pneumonia when he was 8 months old and ever since has been getting fevers every 4-6 weeks like clockwork, ranging from 102-104. He did have a febrile seizure during one of his fevers when he was 18 months old but hasn’t had one since. I don’t take him into the doctor every time because my doctor told me to bring him in if it lasts more than 5 days and most of the time it doesn’t. Every time I have taken him in though, she says its just viral and to go home and wait it out and that its “normal” since he goes to a day home. No other kid I know gets sick this often though, and everyone I talk to about it thinks its so strange. I do worry there is an underlying issue but doctors don’t seem worried about it and won’t take any more steps forward.

12. Linda, can you give us an update? Thanks

    1. My son is nearing 7 years old and is the epitome of health. Growing rapidly, 75% for height and weight, extremely active and athletic and his fevers have drastically reduced. His last fever was several months ago and appear now only once in a while.

13. My son his now 10 when he was 17 months old He started with high fevers out of know where and having seizures. He went to the hospital and his pediatrician several times. The doctor diagnosed him with febrile seizures and they said he would out grow them by the time he was 5, which he did. Now first the past 6 moths at least a few days a month he gets a fever for several days . His pediatrician just tells me it’s a virus . But I’m getting really concerned and I don’t know what to do. Any suggestions?

14. Hi thanks for the helpful posts. My son now 3.5years has been going through this for about a year …fever ever 4 weeks.. However the last two times he has had a prolonged febrile convulsion??? I’m deading the next fever… We are in hospital now and are having further testing but has anyone with this condition experienced seizures with it??

15. Thanks A lot for this Blog…I am also in similar situation.

16. Im so glad to find your blog/post about this. My daughter who is now 8, has had this going on for about 18 months now. It usually last 2-3 days for us and i always thought it was from her lack of water drinking. She drinks water, but not enough in my opinion and then about once a month she gets a high fever and no other symptoms besides a lack of appetite, and on occasion complains about her stomach. I had no idea other kids went thru the same thing!

17. Thank you. I have had my son in the ER 5 or so times over the past 14 months for high (105) fevers. Mesenteric Adenitis was one thought, strep is another… (Like you I dealt with many of his fevers at home after hearing, “It’s probably a virus, just keep him comfortable and hydrated”.) This past Wednesday while he received his second bag of fluids, my friend sent me this link. I read and thought someone had been watching us. I showed the ER doctor who said usually he wouldn’t jump to Periodic Fever, but looking at our history called the hospital pediatrician from our Peds office and my son was admitted for 2 days. We are heading to Denver in the next couple of months to go to the specialty children’s clinic for in depth testing. I had specifically not looked on line for answers to avoid driving myself nuts and yet here was the exact thing I needed to get the ball rolling on helping my son. Thank you. Thank you. Thank you.

    Tanya

18. My daughter has been getting fevers nearly every month (except during summer) for over a year and a half now. She’s been to many doctors and specialists, we’ve ruled out so many things but still no answers. She does have viral induced cough variant athma. She goes from totally fine to 103-104 temp within hours. She also experiences leg pain and headaches then the dry barking asthma cough usually follows . She has missed 20+ days of school this year. It’s very frustrating and scary.

    1. Renee,
       Your daughter sounds like mine. I had to put my daughter on home hospital health when she started Kindergarten. Her teacher came to the house 4 days a week. Then she was started to get better so she went to a home school program once a week and I home schooled her. Now she is almost 8 and can go to school 3 days a week. I home school 2 days. She still gets fevers and then ear infections and her asthma flares up. We have been to so many doctors and specialist. I have even went to a non traditional doctor. We have changed our diet, use essential oils and avoid public places as much as possible. She doesn’t not get sick in July or August. We are usually swimming at grandma’s all summer so we think the clorine and the vitamin D help. I am so sorry about your daughter. It is so frustrating. We refuse steroids for out daughter they just make her starving and super emotional. So we just plan our life around her fevers. We never go to water parks, indoor trampolines and if we fly she is in a mask and gloves. I have to put a sheet on her airline seat and wipe everything down. She just catches cold easily and the fevers get out of control. We are hoping she will grow out of it. Good luck to you and your family.

19. I have a 4 year old that was diagnosed with Periodic Fever Syndrome 2 1/2 years ago. Every 4 weeks like clockwork 104 temp. She went through that for over a year and then suddenly they stopped for 1 year, not one fever. Now she has had two episodes over the last 8 weeks. I know its the syndrome but haven’t seen anyone else who has stopped for a large period of time and started up again. Has anyone experienced this?

    1. Megan, my daughter went fever free for 2 yrs and then in july 2015 they started up again. The infectious disease dr whom diagnosed her said once the fevers from pfs go away, they usually dont come back so now every time my daughter has a fever, i run her to the hospital and they swab her throat and 3/10 fevers she has had have been positive for viral and they think the others were brought on as stress induced fevers as she would get them within a day of her sister leaving to go back to college. She started her fevers at 1.5 and went thru them every month at 104-105 degree temps then from ages 4-6 she never had a fever then from 6-7 which she is currently, she had had 10 fevers in 15 months

20. Thankyou for this article. We are experiencing this with our 20 month old. She has had a fever every month since her 13 month birthday. They are always over 102 and she has had 2 seizures I cant stand the thought of her taking Motrin and Tylenol alternating every 3 hours. But its the only way to keep the fever down so she doesn’t get febrile seizures. And of course the doctors say its normal for children to get sick like that. 8-10 colds a year they say. But she rarely has any symptoms with her fever. Doctors are so frustrating!

21. Having just come out of hospital yesterday after a admission with my daughter, who is seven and has been suffering with a fever(currenty) every 18 days exactly: same symptoms every time for the last 20 months. : I can even predict by her behaviour prior to her fever, then follows by the xact same symptons. My problem is every time she has a fever and is admitted, they find something as an excuse 6 weeks ago Flu, this time tonsillitis(or inflamed tonsils) in England it costs to test for genetics such as periodic fever syndrome, so they are reluctant to do so… meanwhile ill wait another 16days till the next one..

22. My 6 yr old gets fever every month, sometimes twice a month for about an year now. Fever goes up to 104 and lasts 3-4 days. There are no other symptoms like cold or cough or pain. Basic blood work and urine test have been done couple of times and they all came negative. The common thing I have noticed is most of the times when he has a play date (running around a lot ) or when he sleeps really late (weekend), the next day he gets fever. Not sure, if this is related, but trying to relate things to find cause.

23. After reading this story, i have a similar symptom like your son. I have a cold fever at mid night for about half an hour after a gaps of every 2/3 years. I caught this syndrome when i was 21 years. From that, i am still having cold fever at mid night, shakes my body with cold. I dont know what is the disease. I even check for malaria but found negative. Now i am 28 years old now and i have face this for 3 times till now. Is there anybody knows about this please share.

24. I posted november 15,2015 that after my daughter was fever free for a yr that they made a return. I took her to the local chiropractor & she said my daughter’s c1 was off & has done an adjustment twice since december. No fevers since. Plus she is getting accupuncture to help rid of any excess heat. The c1 controls the body temp so when it is off, the body cant regulate its temp.

25. My son is now 4 1/2 years old. 3 months after he turned 2 he had a seizure. He turned black and blue and wasn’t breathing because he had food stuck in his throat. My husband got it out and his color returned. We rushed him to the emergency room. They ran test and from what we explained happened prior to arriving, they said he had a febrile seizure. Said to watch his fevers and not to let them get out of control or he could have another (he has had another seizure since)

    From that point on, every 4-6 weeks, he would get a fever. No other kids from day care would get sick from him, it would only be him. It wasn’t until he reach a few months after 3 years old where he started to have them every 21 days. I started to log them as every time we took him to the doctors, they gave us antibiotics and said he had a virus. They finally told us to get blood work done and sent us to children’s hospital. At children’s hospital they asked a million questions and said they do not think he has cancer or any of those scary things. Back to blood work again. They then sent us to an ENT specialist. They found he had multiple tonsils and needed tubes in his ears. So, my 3 year old underwent surgery and had tonsils and adenoids removed and tubes out in his ears. That was February 2015. For the first few months after surgery, he had no fevers! I was extremely happy and thought we were good to go. Then, he got a fever. My husband tried to calm me and said “you know kids get sick and maybe this time it’s an actual fever like kids get”. So I left it at that. 2 months later, another fever and it keeps coming back every 6-8 weeks now. Here I am typing this as he is at the end of yet another fever session. It’ll be a year next month since his surgery. Every time we take him to the doctor, it’s the same thing and not sure what else to do from here…..

    1. Have acupuncturist to see your son, my son had these fevers for over a year, I took him anywhere and everywhere, and no one was able to give me any answers except “it’s a virus”, but I knew it was not, finally I gave up on all doctors and research natural medicine, ect. I found acupuncturist and took my son there, had multiple visits, she did acupressure, actually she taught us how to do it and we did it twice daily for a few month. Now my son still gets some fevers but they less frequent, last shorter and not as high. Before it used to be up to 104 and higher, now 102-103 just for 1-2 days and it’s down to 101, I know for everyone its sounds still a fever, but for me- it’s much better. I hope one day he will outgrow this nasty condition. good luck to you!

26. I just came across this story. My daughter (now 21 months old) has been having the same thing for almost a year now. I’m so glad we are not alone! We see a pediatric infectious disease specialist in a few weeks. I feel so helpless. Her fevers the last 2 months have been lasting longer & happening more frequently. A fever started up again yesterday. Thank you so much sharing this story

27. My son was diagnosed with periodic fever syndrome 3 years ago when he was 2. His fevers cycle about every 3-4 weeks and range from 102-106. We opted to do steroids for treatment but then his fevers became too close (occurring once a week) and we could no longer give the steroids. We went back to the rheumatologist and he wanted to put him in a daily dose of colchicine (used to reduce inflammation in gout patients). Not wanted to start a daily medication, we did some research and came across an Upper Cervical Chiropractor in Montana that had treated a girl with periodic fever syndrome. Her fevers stopped with adjustments. We found one in our area and she did an exam and his C1 vertebrae was misaligned. It was applying pressure to the part of his brain stem that controls his temperature. He started treatments 14 weeks ago. She started with adjusting our son twice a week for 2 weeks and then once a week for about 6 weeks and then every other week for the next 6 weeks. Today we found out she only wants to see him once a month. NO FEVERS, NO STEROIDS for the past 14 weeks. I was skeptical at first, but I think it might be working. If your child has periodic fever syndrome you should find an upper cervical chiropractor in your area and at least discuss your child’s issues with them.

    1. I am amazed and thrilled at your cervical chiro suggestion. My own friend’s son has been seeing my chiro for ear infections. He was a preemie and had one almost every month. He sees chiro after treatment for once a month. No antibiotics or ear infections for over 2 years. How did you find a special cervical chiro? Thanks sooo much!!!

28. My daughter was diagnosed with this 3.5 years ago after going thru monthly fevers for 2 years & then weekly fevers. They stopped for 2 years. Now they are back. Time to go visit the specialist that diagnosed her as she said most of the time, when they go away, they usually dont return. Well my daughters fevers have returned. I do notice that she has horrible breathe. Perhaps her tonsils need to be removed as well

29. As I lay hear reading these storys with tears running down my face with fear. On April 3-4-15 I gave birth to two beautiful healthy baby girls via c section. I was put to sleep due to my previous 2 pregnancy’s being c section and my girls both being breach the 1st sign of labour I was to be rushed in but the doctor not doin his job let me go into full labour b4 taking me in. I suffered an anxiety attack so was put to sleep. I was in recovery for 2 hrs and couldn’t wait to see and hold my girls. 5 min after being taking into my room I hurd code blue nursery. That mummy instinct everyone is talking about,well that was me. I dnt knw how I got off that bed but I did and ran into find my previous baby girl lifeless. I still have no answers 6months on. My baby that I still have with me has been getting temps every 4 weeks with no sign of a cold or virus and also last 4days. I get the same thing it’s jst a viral infection but my question is always the same,y doesn’t any1 else in the house get it. I’m scared absolutely terrified it could be something nasty so I Google search and come across ur blog. Still can’t shake the yucky feeling in my belly. Indi is only 5 months old and we have already suffered complete heartache I’m praying to god its nothing horrible.

    1. Hi Shannon, I am so sorry to read of the loss of your little girl. What a heartbreaking story.
       For your baby with the recurring fevers i would recommend you read up on the following website http://www.autoinflammatory.org
       There is a wealth of information on the various types of periodic fever syndromes and the testing that can be done for them. There is a facebook page as well and a huge support network. I hope that information helps point you in the right direction to get some answers.With best wishes.

    2. Shannon, first of all I’m SO SO SO SORRY for your loss. That must be the hardest thing you’ve ever had to go through in your life. Because of your loss I am sure that it seems to make everything magnified for you in fear for your 5 month old baby girl. Fevers are scary. To share my experience, with my baby girl who (was born growth restricted, and was carried breech most of the time), she started getting fevers in February. It started out small enough. 100 degrees and then it would go away and come back in a week, up more… until it reached 104.3.. I freaked out. Took her to the ER at 6 am, and of course they could find nothing wrong. I am sure it was viral. A couple of months later, it was back. 104.3, probably viral. Then in July, her last fevers came and of course… probably viral. Babies are tougher than we think, she’s been fine but I started her on Ibuprofen at 6 months (because you can’t give it before 6 months) because it works so much better than Tylenol. Tylenol never took her fevers down, AT ALL. Anyways, I wanted to say, I’m sorry and that even though the fevers are there, hopefully they will level out soon. Take her to the doctor and make sure there’s no ear infections or anything. As a mother, I know that freaking out over fevers is normal. It’s scary and you are freaking out the whole time just trying to make things as comfortable and trying to get the heat out. It’s hard. You are strong.. try the infant tylenol, and once she’s 6 months old go for the Ibuprofen because it may really help with the fevers.

30. We are going through the same thing with our 5 year old girl… Same exact symptoms. She developed another fever this afternoon and its been going on for a few months now. We are going back to her pediatrician tomorrow…. It’s hard not to assume the worst when something like this consistently happens. Thank you for your post

31. Our 12 year old started with periodic fever at about 5 years old peaking at 7 years old. Thankfully they have become less but I know exactly when he’ll get one. Unfortunately, our 6 year old son is now starring the same pattern. Pediatrician is already tracking pattern and feels my second son is also starting the periodic fevers.

    1. Silvia,
       My daughter has suffered from fevers and chronic illness since she was 4. She is 7 now and is 13 weeks fever free. We went to so many doctors and no one could figure out why she kept geting fevers. We made a decision that has changed our life. We went to a friend of mine that said she could help. She read her blood under a microscope and told us that our daughter had to much yeast in her gut and her red blood cell count and white blood count was low and the red blood cells were very sluggish. She said we need to eat more raw foods. We can up with a plan. My daughter and I now eat a very stick Paleo diet. She is healthy and for the first time we actually had a summer full of events instead of doctors office visits. She does not take any medicine any longer. It has changed our life. I truly hope that this can help your children. Diet can make a huge differnce.

    2. Hi Silvia I would recommend you look at joining facebook group Autoinflammatory diseases-rare but true for further info. An extremely knowledgeable group on all Periodic fever syndromes and a huge support network. They have a fantastic website too with a lot of information. Best of luck to you and your children.

       1. Sorry I meant ‘rare but not alone’

32. So we just came home from 4 days in the hospital. Been seeing medical advice as this has been going on for over two months, but our fevers are daily. From 1-5 episodes per day, each lasting 5-45 minutes. Last week we went to 2.5 hours on Tuesday, then Thursday her heart ate dropped and temp shot up like a rocket. Thermometer stopped registering at 108.5, we iced her down and headed to ER. As its a holiday weekend, no specialists available to consult in the hospital and we are back home. All your stories seem to be more spread out cycle of fevers, not daily. Anyone out there had similar? They are checking for pheochromalsytoma and carcinoid syndrome, but her symptoms don’t fit anything “textbook”. Thanks.

33. I actually have this syndrome, I’m 17yr old guy now. I was diagnosed after a year and a half of doctor visits. Mine was particularl because I was 15 at the time. Usally it’s very young children who get this.
    I had a tonsillectomy and so far it cured me. Until recently, I feel it coming back which was a possibility. If so I will live with it for the rest of my life..
    Wish your son the best!

34. Interesting article…
    http://www.hormonesmatter.com/autoinflammatory-syndromes-adjuvant-induced-pfapa-cyclic-fever/

35. Has anyone here tried Cimetedine? My 18 month has just been diagnosed with PFAPA after bloodwork and excluding all other forms of periodic fever (familial mediteranean fever, etc.) I’ve read Cimetedine only works in approximately 30% of patients. I’m wondering what others experience with the drug have been?

    1. Hi Robyn, my daughter was diagnosed around the same age. They put her on the same medication. It did lessen the length of the episodes (7-8 days down to 4-5) but it did not get rid of anything for us. My daughter had severe seizures with every episode so we tried EVERYTHING!!!! Finally at 2 1/2 they decided to take her tonsils and adenoids out. Honestly she has only ever had 1 episode since that was done 6 months ago. She was having them sometimes twice a month and we spent a LOT of time in patient at the children’s hospital. It was tough to get the doctors approval but once they started researching it they agreed with us. We were told that if a child responds to prednisone while in an episode then their chance for surgery being a success jumps up to 90%!! I wish you the best of luck, I pray your child grows out of this fast, or that a medication works.

36. For anyone who is interested … I have found some excellent Facebook groups where parents share their children’s symptoms, experiences, and hopeful remedies for this condition… https://www.facebook.com/groups/pfapachild/, https://www.facebook.com/groups/PFAPA.Community/, https://www.facebook.com/groups/5136726703/. Just thought I would share. I know I spent a lot of time researching periodic fever syndromes before I found others who are experiencing the same thing.

37. Thank you for sharing your story. I have brought my daughter to the doctor numerous times only to be told it’s a virus just treat the fever. The fevers are usually in the low range 101 is the highest it’s gotten, she has no other symptoms. I am going to start keeping a record and hopefully next time I bring her in I will have enough evidence for them to do some tests. I was starting to get really scared but according to the comments this is pretty common! Thanks again for sharing your story and the story of others I’m glad to know I’m not alone.

38. I haven’t posted here in awhile. My son’s fevers began when he was 18 months old, which was 2 years ago. Fevers have been gone for a little over a year. But it appears they have returned. Has this happened to anyone else?

    1. My son has been dealing with this since he was 2, and he was diagnosed at 10. He is now 15 and just had a tonsillectomy/adenoidectomy. We have experienced, and read of many others experiences, that the fevers and other symptoms can resolve for a period of time and return later. There are also ‘feverless episodes’ where the joint pain, headache, stomach pain, mouth sores, etc. present without fever. There are some excellent groups on Facebook you may want to check into. Search for Pfapa or Pfapa Child.

       1. I highly recommend the facebook group Autoinflammatory diseases-rare but not alone. It has a wealth of information on the various types of Periodic Fever syndromes. It is a very well managed page with links to the most up to date research papers and articles. It has been a huge support to us and I hope it can help others of you out there too.x

39. I wish I had trusted my gut and researched this a year ago. My now 2 yr old daughter has been getting fevers at least monthly that last 3-7 days and was always told ‘virus’. I can barely manage to keep it at a 102 even with medication for the first few days and it’s been as high as 105-106. We have to alternate Tylenol and ibuprofen every 3-4 hours because her temps get too high and I hate pumping her full of so much medication..especially at such a young age. This has been going on for over a year now and I just recently started charting the fevers. Yesterday our pediatrician referred us to an infectious disease specialist. I thought periodic fever syndrome sounded like a made-up diagnosis when they couldn’t determine the cause of the fevers. I can’t imagine living with this for years. My daughter has no other real symptoms besides the fever though and typical behavior (doesn’t eat, is cranky, sleeps a lot). Hoping we’ll get answers and resolution soon!

    1. How familiar…today the specialist said the words. Periodic Fever Syndrome…can try prednisone and possibly removing tonsils. We are going to monitor for 3 months. If the prednisone works, will be trying something natural. I do not want to give my daughter steroids every month, nor pump her full of OTC medication, or have an unnecessary surgery that feels like a shot in the dark since not all cases have seen resolution with that treatment. I’ll post here if I find anything that works and will keep monitoring for the same.

       1. Morning Brandy, my son had this for about 7 months once we got the diagnosis we tried the steroid and after three fever episodes his fevers went away. He continued to have the other symptoms for a couple of months but the specialist said that was normal.

          We are fever and symptom free now nd I pray for good.

          Good luck to you
          Lisa

       2. Thank you for your reply. That gives me hope!

40. This is the really condensed version of our experience with the fevers:
    We went through a few months of reoccurring fevers (two bouts of the flu as well) and the same story, “its a virus.” However, I knew because I could predict when he was “due” for a fever that something was wrong. Same story, super high fever (103) for about a day and a half and then it would level off to 101.5 for three days and vanish. Leg and joint pain were his only other symptoms. We tried an infectious disease specialist. We did lab work after several of these episodes and found that some of his antibody levels were low. (Not sure if I am phrasing that the right way, but you get the general idea.) Our pediatrician was concerned that it might be Brucellosis because we live on the family farm. The infectious disease specialist tested for quite a few things and ruled them all out. He then recommended that we just chart the fevers and come back in a few months. Diagnosis for “periodic fever” would have to happen through ruling out everything else. I wasn’t sure (neither was his pediatrician) it was periodic fever because he was missing some symptoms (mouth sores, etc.) Our pediatrician also referred a rheumatologist. Thank goodness. I kept the appointment with the rheumatologist, despite the fact that the infectious disease specialist said that keeping the appointment wouldn’t do much for us. (ALWAYS get a second opinion…even a third.) At this point, well meaning people we knew began throwing around leukemia…as nice as their intent to inform me was, it shook me, hard. We went to the rheumatologist, had tests, ruled out leukemia and other things and were then introduced to an immunologist. The immunologist seemed to know, right away what we were dealing with. She told me that a small percentage of children she had seen were exhibiting the same symptoms, and that she wanted to try the pneumococcal vaccination (the 23 vaccine, not Prevnar 13) and then bring him in for additional blood work after a few weeks and look at his antibody levels. She explained that some children would need to come in maybe annually and have repeat injections if their antibodies didn’t keep up. We took the vaccine, and it was awful for two days. My poor baby had so much pain at the injection site, he cried for a day and a half it felt like. We kept him as comfortable as possible and after day two, he improved greatly. We were praying he wouldn’t have to have an annual vaccine. We went in recently for the follow up lab…and all but three of his 23 levels were up (I believe before he was low on 14 of them, but the information isn’t in front of me, so this is from memory.) The immunologist and his pediatrician were both very pleased with the outcome and both feel that he will be fever free now. I do too. He seems more active and happy. He eats more. We haven’t had any serious illness or fever since then. I hope that you all can find someone to listen to you. I know what it feels like to sit in a room explaining to a professional that you feel something is wrong, that it’s serious and that you want to do everything possible to just know what it is, to know what you’re up against. Remember that you are their moms, you know them better than any doctor or specialist can. Don’t ignore your gut. Ask, research, call, document everything. I hope you all find your answers and that your little ones can be fever free.

    1. Checking in again. From April through July we were fever free. August rolled around and we have had two fevers. Usually they are 20-23 days apart and four days long. The second one was only 10 days after the first and has lasted over four days. (We are still in it.) The first fever brought a hard and swollen lymph node and headaches. This one has come with severe sinus problems. Our doctor has referred us to another immunologist for allergy testing. I feel like we are back at square one.

41. Hello! I am hoping this thread is still active 🙂 I stumbled upon it today doing research regarding my 6.5yo son. I’m so baffled by what is going on with him and everyone seems to think it’s always a “virus”…which it might just be. Does anyone have any experience with this flaring with over activity / exhaustion? I haven’t noticed any sort of monthly or weekly trend, BUT my son (for at least 3-4 years now) can be counted on spiking a crazy high fever with few other symptoms (was slight vomiting…like one time…when he was younger…now it seems to be severe headache / neck pain) every time we go on vacation anywhere or if we have a really busy few days where there is little down time and/or he goes to bed late and wakes up early. Does this sound like anything that anyone else has experienced or could it really be that he catches a virus with a fever that lasts less than 24 hours ANYTIME we travel or are busy? I would love suggestions as to whether I should pursue this further or let it rest and accept it as a virus! Thank you all so much!

    1. http://www.nomidalliance.org/compchart.php

       this site has good information on all the different Periodic Fever Syndroms. The chart lets you compare symptoms.

       1. Wow! This is a great chart!

    2. I believe my daughter develops these fevers when she is overly exhausted or stressed about things happening around her. She had the fevers for a few years. Then i noticed she was building this fire up insude her body because she was getting angry & clenching her fists. I told her to hug herself when she was mad or upset. Fevers stopped the following month. Fever free for 2 years. Now fevers have been coming back. 3 fevers since july. Her & her little sister fight alot, her other sister left for college, her other sister left for boarding school. I think she has this fire burning inside her from the fighting & being angry & upset. She is only 6. Her body says enough…settle down with this high fever. But i also notice she has bad breathe too. So perhaps its so ething else

42. I’m just realizing this could be a thing. High fevers and no symptoms. 2 1/2 year old. Although this time she had a sharp pain in abdomen the day fever came on. Her fever was 104 to 103, I just realized her last fever with no symptoms was a month ago same day. This is so weird. It seemsike it must be related to some kind of inner cycle? I’m going to start keeping track. We had one febrile seizure last year too.

    1. To Dary–the sharp abdominal pain leads me to think it may be Familial Mediterranean Fever (FMF) which both of my daughters have. My advice is to bring your child to the doctor for every fever as they only take you seriously if they have documented the date and the fever themselves. Learned this the hard way! The good news is that there is a treatment for FMF–colchicine–and it has given both of my girls their lives back!

       Sheri

43. What is scary is that doctors today seem to use “its a virus” as a catch all phrase! I am just not buying that children get reoccurring fevers for NO REASON. When I was 28 years old I needed retinal reattachment surgery and had other eye problems. The doctors ask me if I had re-occurring nose bleeds as a child….I did. At the time my mother was told they were nothing to worry about and some kids were prone to them, of course she put humidifier in my room and did everything under the son. I was told those nose bleeds were early indications of what became a very serious problem as an adult. Also strange is the fact that in my 61 years of raising children I not only NEVER dealt with such a thing but NEVER heard of anyone who had EVER dealt with a fever syndrome? As parents WE read and interact with other parents and children and someone somewhere would have HEARD of this?? Not so, according to the comments on here.

44. Thank you for sharing your story I am so thankful to have read it. I pray your son does fully out grow this! My sweet 23 month old has been having reoccurring fevers which we are in one now. I felt the unction to begin to document them in November last year when I thought surely she is having way to many fevers. She has had 4 now in almost five months and I am seeking the Lord, her pediatrician and information. I came across your blog and am so glad you shared. I am feeling somewhat depleted at the moment over it all but know that it will be ok as we journey on. Thank you for sharing I look forward to great reports and updates to encourage many!

45. We are in the midst of rheumatologist appointments and they have recommended that our child has a pneumococcal booster. I am still researching it, he has had four rounds of this vaccine as an infant. The rheumatologist believes this is a common reason for the fevers. I am still not sure how I feel about it because I have been able to predict the next fever within a day or so and why would this need for a booster suddenly manifest itself after four years? Finding anything online is difficult because of sketchy sources and general lack of information. Will keep posting.

    1. Bobbi,
       We did the pneumococcal booster and my daughter still has fevers. We are going for a second opinion with another rheumatologist in a couple weeks. She can not even go to school anymore. Her fevers are so often. I hope you find some answers.

       1. Louise,

          Yes, second opinion always!! I know the feeling of missing so much school. I knew that if this continued to be a problem, we would have to look into homeschooling. Was the booster the 23 or the 13? Did the pediatrician or an immunologist give it? In our case his immune system seemed to be on a cyclic low. Every 22 days he became susceptible to any illness around him, and as a first timer in school, he must have been through everything you could get from other kids. He had the same type of flu twice in a 6 month span. Keep asking questions, don’t let them give you vague answers. Even when it feels like you’re asking the same things over and over and over again. I hope that you find your answers soon and that your little one can be well and have a rest from these fevers.

46. Thanks so much to everyone who has commented here, it has really helped us.our 6yo son has been having fevers and headaches for 18mths now every 4-5weeks lasting 3 days.
    I have had to work so hard to have anyone take it seriously but thankfully when we went tonthe ED this weekend they ran bloods and his white cell count was crazy . They have finally begun to take this seriously and we have been referred yo a rheumatologist.
    I felt like they were thinking I was making it up but thankfully his fever went crazy during the trip to hospital and other people finally saw what we deal with each month. I was so relieved.
    I am interested to read about the children whose tonsils have been removed and will discuss that with the paediatrician when we see him next.
    we are still trying to establish exactly when we need to go to the ED and when we can manage at home..because truth be told he wasnt ‘that bad’ on this occasion but we were just sick of no one bothering to try to give us any answers so we resorted to taking him to emergency.
    Considering he wasn’t really that bad this time it is a concern that despite appearances, his bloods told a different story and he was actually very very unwell. So its hard to know when to take him the the ED and when to battle on at home. I guess we just have to go with our instincts on that one.
    I am relieved he is finally on the paediatricians radar and that they are finally helping us.
    Best wishes to everyone else dealing with this.

47. Small children are almost never checked for appendicitis but it does happen. Find a doc who will take you seriously

48. I am currently seeing a specialist who recommended that we chart our son’s recurring fevers(which I had already been doing thankfully.) After searching online attempting to print a simple chart, I found that there really weren’t any. For any one else who happens to have the same issue, I made two charts in PDF and editable formats. It took several attempts to get most of what I needed on a chart, and if your needs are different, please tweak the make up. This is just a helpful start to documenting the time and temp for the doctors and having an overview timeline sheet.

    Instructions: https://docs.google.com/document/d/1KLSHGBSzk06gtQN20yFLe02Z6zsTh4UKoot7XN_29NQ/pub
    Chart A: https://docs.google.com/spreadsheets/d/1IOY4KPrbncQe9iS1jaE6MR93qt-MS1j_xZz1eGiGonc/pubhtml?usp=gmail
    Chart B: https://docs.google.com/spreadsheets/d/138xxmYkHbgOBrROSB2eyFxwjF7H9dEwALO53TFHFiz8/pubhtml?gid=608733687&single=true

49. My baby girl is 17 weeks this week. 4 weeks ago she developed a fever which was pretty low and I didn’t think a lot of it because it went away after a couple of days. A week and a half ago she woke me in the night with a 104.3 fever. I rushed her to the ER, they did a pneumonia test, xrays, RSV test, Flu test, and a urine sample to check for a urinary infection. All were negative. Here we are a week and half later and she’s got a 101.8 this morning. I am hoping they take some blood work today when I get her into the dr. office but I don’t understand why this is going on with my baby girl. It has me constantly worried. She was born growth restricted, we had to induce labor at 38 weeks (we didn’t know there was a problem until 37 weeks) because she was also in the 9th percentile for her weight. She was also frank breech. I am wondering if she has the same thing going on with your boy. It’s scary, I’m not used to this…but she doesn’t seem to have any other symptoms. The tylenol doesn’t help AT ALL.. NONE AT ALL. I have been instructed not to give her ibuprofen since she’s under 6 months, but when I did give it to her it helped much much more than the tylenol. I don’t know what to do and I feel like they aren’t really going to search for the answer, just tell me it’ll be ok and move on like they did at the ER. They told me not to freak out unless the fever reached 105 or 106, I’d say 104.3 is close enough to 105. Either way…. I feel like crying. This is going on way too much.

50. Thank you so much for this post. Your story is almost identical to mine! My son’s fevers started with an episode including a seizure at the age of 1. He will be 2 next month and we are still in the process of getting firm diagnosis. During his episodes his temp is between 104 and 106.5 during which he hallucinates and scares me to death. Rarely do I get it below 103 with ibuprofen. I am unable to work because his fevers last for 3 days and he has to be fever free for 24 hours before returning to school. How do you deal emotionally with this disease? It is terrifying to see him like this and not to mention the ups and downs with lack of sleep for both of us.

    1. It has been so hard, Vicki! But I have good news regarding my son’s condition. He just turned 6 and we have not had an episode in about 2 months! They are getting fewer and shorter. We are quite hopeful that he is growing out of it. Hugs to you!

51. We are recently noticing that our daughter (3) has fevers for no reason every 4-6 weeks. No other symptoms that would suggest an illness. Tonight she developed a sore/blister on her bottom lip. Its the 3rd day of fever and its been between 101-103. I’m a mother of 5 and she is my youngest. All of my children are typically healthy. I never experienced this before with any of my other children and I’m starting to be concerned that there is an underlying problem I’m missing. This supermomma is starting to feel helpless;(

52. My daughter is almost 4 (feb 24) and has had a fever about every month since she was around one. The last 3 months I have been keeping track and right on cue she has another one! It’s scary and I pray it’s nothing life threatening. Thank you for your post. It gives me some comfort knowing I am not alone here.

53. My son started with random fevers from kindergarten – first grade (1 or 2 each year); I thought nothing of it. BUT when second grade started (8 years old) it hit me (light bulb) he’s getting these fevers every month! I called the school and gathered all of the sick dates/notes that I turned in and charted everything. Five fevers in exactly five months (each lasting 3-5 days). I decided that the next time he gets a fever we are going to get blood work (best to do it when the fever is active from what I read) – that was yesterday. So, NOW we wait! Very scary and sad time. 🙁

    I do have to say that in-between fevers (while waiting for the latest one to hit) I thought maybe I needed to try and give him a boost of antioxidants – so I bought a smoothie maker and have been giving him daily smoothies for breakfast. I don’t know if it is a coincidence or not – but this last fever has not gone above 100.7 degrees AND so far the fever has only lasted for a few hours (on and off) for 1 day (of course that is subject to change as fevers are so unpredictable). I am wondering if adding antioxidants made the difference. Wondering if anyone has made alterations to their child’s diet?

    I still can’t say 100% that he has PFS – but he does have many of the signs (fever, with sometimes one or more of the following: headache, weakness in his legs, fatigue, loss of appetite, upset stomach). 🙁

    1. Hi Jennifer,

       My daughter has a PFS but it is Familial Mediterranean Fever rather than PFAPA. Don’t be sad or scared because once I learned about periodic fevers we could figure out what she had with the help of a rheumatologist. The only scary part was when I had no clue what was happening to her! Now she is on a medicine called colchicine and leading pretty much a normal life–no more fevers and hasn’t missed a single day of school this year!

       Yes we did make dietary changes. Gluten and dairy both seem to trigger her symptoms. She had been fully tested for food allergies and celiac and gluten sensitivity and all came back negative. The doctor saw no reason why dietary changes would help, but I went ahead anyway and it made a big difference. I’m wondering if maybe by relying more heavily on the smoothies he is getting less gluten or something else that bothers him? There can be other triggers as well but I know gluten and diary are two big ones so we started there. Anyway, lots of whole healthy foods can never hurt. Good luck to you!

       Sheri

       1. Sheri,
          We just went to the rheumatologist yesterday and he said he wanted to do genetic testing for Mediterranean fever. We will be doing that next week. My daughter has been homeschooled for 2 years now due to fevers and getting sick often. We have been to her pediatrician many times and then the immunologist. I am hoping the rheumatologist can figure it out. She just wants to be a kid. We don’t let her do a whole lot because she seems to get so many fevers and the. Sick right away. Glad they knownwhatbyiur daughter has now. Thanks for sharing.
          Louise

54. Oh my goodness this is scary. My son is on his fifth fever since he started kindergarten in September. I kept assuming it was just exposure to viruses and my doctor assured me so saying it is normal for a child to get sick up to ten times in their first year of school. What is strange though is that he was in part time day care for a year AND he was vaccinated for the flu. On the other hand he has had slightly different symptoms each time and none of the joint pain, achyness, or mouth sores. The only consistent symptom he has had with all the fevers is a headache. Has anyone whose child has this condition also experienced headaches along with the fever.

    My heart goes out to you all. Watching my son struggle through this is heart wrenching and stressful to say the least. Those of you dealing with this for years have a strength in you I truly admire. Im going to start keeping a “fever log” tomorrow. Thanks for this post.

    1. Hi Tim –

       Oddly enough – my son is on his fifth fever since August 29th; the fifth was yesterday (January 21st) when I took him in for blood work. I also started my fever log yesterday (with the school’s help – they were able to give me exact dates).

       To answer your question – yes, my son told me that his head “felt funny” yesterday; that’s how he explains his headaches. He also gets weak legs and fatigue for the most part.

55. I am a 32 year old female, and from the age of 3-6 (1985-1987), I had this exact same thing. I would breakout into very high fevers, all the same symptoms but also including hallucinations. My parents would take me to the hospital promptly, only to be told they couldn’t find the source of the fever. It got so bad that I was hospitalized, and later diagnosed with “unknown fever syndrome” I’ve always wondered what caused this, and still have very vividemories of it! Eventually it went away for me, and I hope the same for your son.
    Cassandra
    Sandra251982.ct@gmail.com

    1. Very nice to year from an adult who has finally outgrown hers. Amen to your prayer. I pray my 6yrs old Son also out grown his soon. He has been suffering from this fever from age 2yrs plus.

56. Wow reading these blogs I am finally seeing a light at the end of the tunnel. My 4 yr old son has had reoccurring fever every 2 weeks like clock work. Down for 2-3 days. He’s very smart and growing normal but the fever, leg pain, stomachache, headache, loose bowels and runny nose. I’m going good to start recording ever fever and syndrome and talk to my pediatrician. Thanks for the information

57. This is so wonderful to hear about this, knowing that I am not alone. I turned to the Internet for answers when my daughter was just 9 months old and was getting fevers consistently (102 – 104) just because I visited the Emergency Room several times and her pediatrician’s office several times just to hear that she had a virus and it will soon drop off on its own. I had seen 4 different pediatrician’s before I found the right one for my child, a pediatrician that I can honestly say has some concern in my child’s health. I started to visit her office frequently when my daughter was just a little over 3 years old, each time she had a fever, I took her in the clinic to be monitored on what was going on, what we did notice is 50% of the time she had a fever, she would also test positive for strep throat. My daughter also seemed to go through several blood tests to figure out what else could be causing all of this, possibility of rheumatoid arthritis which all came back negative. Close to her 4th birthday, she had been referred to ENT at Children’s Hospital, which at that time I had been informed that her tonsils and adenoids would need to be removed, This may be the cause of these fevers. I was very excited and nervous at the same time, but I had hopes that this was the root cause of the fever. She was 4 years old when she went in for this surgery, as weeks went by, the fevers had vanished. Until…… 11 months later. Her fevers came back, this time they ranged much higher (103 – 105) with no other symptoms. We returned back to her pediatrician’s office for more testing. I am back to keeping a large supply of Motrin (ibuprofen) as this is all that helps her. At this point, we are referred to a specialist at Children’s Hospital that specializes in periodic fever. After 2 visits while my daughter has a fever, she is now diagnosed with PFAPA. Please look up this syndrome as it is very interesting to read. My daughter is now 11 years old and continues to get high fevers, continues to take Motrin, uses cold towels for her head to cool down, eats tons of popsicles and drinks lots of fluids to keep her hydrated. So I have hopes that one day these fevers will soon drop off and will stay away once and for all. Until then, I will wait and continue to monitor my child.

    Good luck to each and everyone going through this as it is hard to be a parent watching your child have to endure these horrible fevers. Thanks for listening.

58. Interesting that there are several people on this blog who got this as teens or adults. I wonder if they had their tonsil s evaluated or their genomes mapped?
    http://Www.23andme.com will do it for $99 but FDA won’t let them interpret it anymore because they were undercutting all the big labs that charge thousands . There are several apps [Promethese, SNPedia] you can run your raw data thru to find out if it is genetic. If so then you & husband will be carriers even though not sick. Good to know for future & other family members. If not then remember fever is the body’s defense system. There may be a latent retro or entero virus or some form of parasite that cycles every 30 days. This could account for why tonsil removal sometimes fixes this as the offender may be centered there. These are often difficult to test for. It took electrodermal testing to find mine and I was able to eliminate parasites, viruses & fungus once I knew it was present with specific supplements & herbs. I would try to avoid steroids as they are destructive to the immune system.
    Good luck with you child dear.

    1. Thanks for the mail. What kind of supplements and herbs did you use to eliminate the parasites, Viruses and fungus.

59. Our 9 year old and 5 year old are still cured from this strange illness after having tonsils removed. They both had a very mild episode after operation but nothing since.

60. My 11yr old son was diagnosed with this same condition when he was 6, we went ahead and had his tonsils removed and he has not been sick since. Now my 4yr old sonnis going through the same thing. We are seeing the ENT on Tuesday to start the process to get his tonsils out.

61. Interested to know how many of the affected children have been diagnosed with gluten sensitivity. I have posted before about my 14 year old son who recently ‘outgrew’ PFAPA during puberty, but dealt with the effects for 9-10 years beforehand. It was recently suggested by our pediatrician that he go gluten-free because of joint aches after any type of activity. I asked if this could also be related to the PFAPA issue, and the response was that both are auto-immune disorders. Just wondering if others are having the same experience.

    1. I tested my child for a series of allergies and he did not show an allergy to gluten. Not sure if someone cannot be allergic but still be intolerant.

    2. PFAPA is auto-inflammatory, not autoimmune. After putting our daughter on the auto-immune diet though (no gluten, dairy, eggs, etc.), all of her PFAPA symptoms pretty much stopped, no fevers, no swollen lymph nodes, etc… for the first time in 6 years! This site: http://www.saidsupport.org has great info about PFAPA, other fever syndromes, and how they relate to diet, allergies, and the difference between auto-inflammatory and auto-immune stuff. They basically say that diet can’t solve the problem, but helps in some situations.

    3. My daughters have Familial Mediterranean Fever which is another type of periodic fever syndrome. It is also auto-inflammatory. Eating gluten free and dairy free has helped them both a lot in terms of pain and fatigue. In spite of the doctor saying it shouldn’t make a difference!

    4. And to Linda: Yes, my daughter had all the tests for food allergies and specifically for gluten. She even had a colonoscopy since they thought it might be Crohn’s. All test results came back “normal” which is why the doctor said it wouldn’t make any difference. But we decided to try it anyway and we are so glad we did. It’s worth a shot!

62. Wow. me and my wife have been experiencing literally the same exact cycle and same situation with our almost two year old daughter. this is real people. this article gives me hope that others are experiencing and coping with this too. thanks so much!!!!

63. My son has been getting fevers since age of five .he’s seven now but, Drs. are not 100% sure if it’s
    periodic fever syndrome . What other symptoms have all your kids had besides the fevers and feeling ill ?

    1. The fevers are abnormally high and happen every 3-6 weeks like clockwork.

64. My grand daughter has this and eventually I opted to do the tonsillectomy. She has been fever free for exactly a year and bam! It’s back again! I also do the Advil/Motrin and at times I have to stack with Tylenol when her fevers reach 104-105. It is exhausting for both of us. I’m curious as to why you have not opted for steroids. My grand daughter (who I have custody of) takes one dose and the fever goes right away within 24 hours. Is there a downfall to the steroids that I am not aware of?

65. I just learned of this syndrome today after a friend told me what her son had been experiencing. Our daughter suffered high temps every four weeks for a few years and I too didn’t take her in all of the time. I did some research online & met with am ENT who did agree to the T & A and she never had an episode again. She was either 3 or 4 years old when she had them out & is now 11. It was the best decision we made for our daughters health but I realize not all children have the same success. Hope your son is through all of this & has outgrown them.

66. I am absolutely shocked. My child has had these problems for over a year, and despite a million trips to her doctor, and me being an RN, I only learned of this yesterday. Never heard of it! A random lobby conversation brought it to my attention. I can’t believe her docs never even mentioned it. I’m relieved and outraged at the same time. I’ve had many sleepless nights worrying my daughter had some rare childhood cancer or other life jeopardizing condition. I have begged her docs to do more testing, look deeper, think outside the box, anything. All to no avail. I can’t understand why this diagnosis was never mentioned, why her C-reactive protein and ESR were never tested…
    I will be calling their office first thing Monday morning to demand a standing order to run this blood work during her next febrile episode.
    Thanks to all of you other involved parents for sharing!

    1. I am so glad you found this site! It is such a relief. Our Josh went over a year before we got his diagnosis through a pediatric rheumatologist and then verified by an infectious disease doctor. That is where you need to go. Pediatricians do not know what this is. It is very rare. Our specialist hadn’t seen a case in 2 years. Good luck to you and your daughter. At least now you have a lead to follow and that is huge!

       1. Infectious disease is who figured out the issue for my grand daughter as well. Thank God for Nemours and this doctor!!

       2. Shelley, we as well saw specialist at he Dell’s Childrens Hospital in Austin tx.
          please fill free to email me. my daughter suffers from the same thing.

       3. Can you email me please I have some questions for you ..Thanks

          chuylulu619@gmail.com

67. Thank u so much , my son is 4 now n he has been suffering this since he was born n I had no clue y

68. Hello. Thank you for this blog, and thanks for all the comments. My son just turned 2 at the beginning of Oct. Recently he has been waking up with 102 fevers. It is horrible and scary. During the day he is fine it is just in the morning time. This is my husband and I first child, so we are in panic mode. I wanted some kind of clarity about what is happening. I did get some with this blog. Thanks again.

69. I think my grand daughter is going through the same thing now:( we have been in the hospital for two days n they cannot figure it out! They won’t release her until the fevers STOP! That’s about the only symptom and a BAD belly ache!! So as I type this her fever has spiked once again n she can only have Tylenol cuz Motrin doesn’t come in suppositories! She is 3 yrs old n miserable and wants so desperately to go home:( she’s had two adult size bags of iv fluids n it takes 2 hours for the Tylenol to start working! I’m beyond exhausted n they r running more tests tomorrow I’m praying this goes away as quick as it came! What made ur story stick out to me was in August of this yr this same EXACT thing happened n now it’s a repeat of August but worse!! She’s running around in the morning n down with a 103 fever by lunch time it’s crazy n I’m lost but if I find out anything I’ll b sure to share what they found

70. Hi this is very helpful to hear, my daughter is 4.5 yrs now and the last 8 months has consistently been getting a fever every month like clock work. I tried telling the pediatrician that I thought this is what it is and at first he dismissed it. Now we are scheduled to go to a specialist. I feel so bad for her but it is comforting to hear that we are not alone. It has been very frustrating to watch her go through this and not know what to do or what is causing it. We don’t have a diagnosis yet but it is exactly as you describe what your son goes through.

71. Hi my partner is suffering from this as well and he is currently under a therapy with colcicine, did any doctor prescribe this drug to your son?

72. My son has been having recurring fever since he was 8 months old. Now he’s 4. Between 8 months to 2 years old, his fever was almost every month, lasting 3-5 days and followed by flu and cough. Between 2-3 years, the gap has widen to every 1.5-2 months. Now the fever recurrence is every 2-3 months. Every time, we just grit our teeth, rejected the prescribed antibiotics and just administer very frequent paracetamol until his fever subsided. This week, it’s the first time his fever returned in less than 5 days after a bout of high over the weekend! It is each time diagnosed as viral infection or due to swollen tonsil or possible dengue fever. We live here at a tropical country which aedes mosquitoes breed heavily especially after bouts of rainy days.

    Each time, after his fever has spiked to the highest, 41 degree celcius, it will then subside the next day. Each time when he’s on his medication he’ll be as active as usual but the fever returns once the medication wears off. We would notice that the fever has subsided when we no longer has to administer his paracetamol after more than 5 hours.

    I only hope that this gap will widen till he only gets this kind of high fever… 2-3 times a year, lesser and lesser times per year as he grows. I take it as it’s his body’s way to build his immune system although I have no idea how long this will take. Each time he outgrows his fever, we would celebrate as if he has triumphed over the virus attacking his body.

    I just came accross this support site as well when browsing for the same topic – just sharing if this might be of interest to the readers here: http://saidsupport.org/child-keeps-getting-fevers/

    To all parents, stay strong and alert.

73. Thank you for this. My son suffers from many unusual illnesses. About a month ago he started with a fever that only lasted 18 hours. Then 20 days later he had it again 105 this time. Then this past weekend again up to 103. Thankfully one call to our pedi and he said track the temps and bring him in during the next cycle for testing. This has been helpful in me knowing I may be onto something!

74. My daughter is 6 and started with fevers about 4 weeks ago. They are every 2 days and range from 101-103. She has no other symptoms. She just gets grumpy then I take temp and she sleeps it off. Tylenol is our last resort. She can not take Motrin. She has been home schooled now for 2 years because she kept getting sick. In and out of doctors office. She has been healthy for months now so I thought we were clear. Then the fevers started. So glad I found your info. I’m going to ask the doctor about this. They just tested her for all those scary things. We are waiting for results.

75. Hello, I am from Denmark. My youngest son, now 20 years old, they had completely the same symptoms, but also with very swollen lymph nodes at the neck and febrile convulsions. At that time (1994-2000), no one knew about the disease and he had to go through terrible studies and we were one day told that he had leukemia, which he fortunately had not. When he was 6 years old, the doctors removed his tonsils in desperation and he was completely healed, without any of all the doctors who had examined him, knew what was going on .. However, I had a hard time believing that he really was completely well after six years with illness every 21. day; the fear about that it could come back sat in me – and I was searching for others with the same symptoms. As the years passed, I ousted my fear because he was well and I did not search anymore. When he was 17, he became more and more “weird” with autism traits – and I looked for a possible association between recurrent periods of illness with fever and discovered that all the symptoms he had as child, was the symptoms of PFAPA, (however, it did not say the thing with his eyes). He then received a subordinated diagnosis: PFAPA. My son has always had tiny autistic traits (as we, his family and teachers, understand now), but not enough for anybody noticing it or discovered it – but as he grow up to be a teenager, it became more clear, that he might had some kind of autism. Now it is unfortunately completely bad and I’m trying to find out if there might be an connection between the recurrent febrile illness he had as child and those autistic traits he has developed.

    If someone that read this do know someone with the same health history, please make an comment to my comment – if it is all right for you Linda Arceo… (?)

    I apologize for my bad english, but hope you understand the content.

    Thanks in advance!

    1. My grand daughter had the HUGE lymph node (on the right) with her episodes. It reapplied after the tonsillectomy until now (exactly a year post op). Now the fevers are back. You referred to the eyes? What were you referring to? Two months ago, one eye swelled shut and I was told it was due to a bug bite on her forehead. A week later the other eye swelled shut and when I wiped it, blood gushed out. The specialist said she had a stye under her eyelid which burst. Now the fevers have returned. Today it was 103.7 under her arm.

76. Chelsi just said exactly where I’m at, too. The “it’s just a virus” diagnosis has to be wrong. I constantly wonder what I’m missing (what each doc we see is missing), and if I am not doing enough to help my son. He is 16 months old has had fevers off and on for 6 months with so many diagnosed as just “a virus.” No other symptoms, Just a hot little body. I feel crazy – like I am not taking his temperature correctly because I often get a higher temp than he feels/acts, and sometimes he acts miserable even in the 101s. I’m way past my comfort level with 104 being “normal” and being a pro at alternating Advil and Tylenol. I am asking my doc to do blood work.

    Here’s what I wonder from anyone still reading… is your child small? I have two boys, but my feverish youngest one is pretty small (11th percentile for height and 7th for weight). He is strong and mighty and proportionate, but little. And I thought I saw someone mention blue feet. Are cold feet and hands something with this? I’ve had a couple passing thoughts about his circulation. Finally, I am thankful for the posts about mouth sores. We’re in a longer than usual episode right now (that included a very scary 105.5 reading on a new fancy thermometer that resulted in an ER trip with no diagnosis), but I now wonder if he has mouth sores that no one is looking for. I thought his loss of appetite was from not feeling well, and begging for a binky he normally only gets at night was soothing. Duh! Thanks for this post and all the helpful comments it brings!

77. My son just turned 4 in august and back in April he started carrying a fever(102-103.5 being the highest) with no other symptoms and month after month the Dr’s say it’s a virus…yet no one else is sick. Yes he is in daycare 3 days a week pre-k in 2 days a week but his older sis has been in school since he was born too. It is not like he has been in a bubble from birth. I know something is wrong yet I am getting nowhere with his drs. This week (fever started today) I am not taking “it’s a virus” for an answer. I am DONE with thus fever. If he does have this syndrome fin ed I can handle knowing that…it’s the not knowing that is driving me nuts!!!

78. My son is 5 years old and he has the same symptoms as your son. This has been going on for 9 months. His fevers are every 15-21 days lasting 2-5 days. We have done 3 rounds of bloodwork. All came back normal except last one indicated he was “sick” ? Dr has no idea ??? He ordered a 4th round of blood work but my son just couldn’t go through it again. I will try again in a few days. I am stressed as I know this is important as the clock is ticking before another fever comes on. Just frustrating no answers. This is not contagious as his twin sister never gets it nor his older siblings. When it first comes on my first reaction he has the flu and whose next. But it’s just him. Signs – appetite decreases whinny tired. Fevers usually strike at bedtime or wakes up with them. Hot immediately 102-104 he complains stomach aches and joint pain. he usually throws up I give him Tylenol and or Motrin to help get fevers down. During these 2-5 days he usually drinks water, Popsicles, diluted gatarade. He sleeps a lot watching TV While he rests. He misses a lot of school. We are hoping next step to see a specialist for more answers. It’s just stressful heartbreaking to watch him be in pain. I thank you for sharing your story. I am glad we are not alone but sad at the same time.

    1. Oh, sweet Carole,
       My heart goes out to you. This is so hard to go through. Pediatricians just don’t know how to diagnose this. At least ours didn’t. Please see a specialist as soon as you are able. They will know the right blood work to do. Our little guy also has a reduced SED rate, meaning a compromised immune system. We saw both a pediatric rheumatologist and a pediatric infectious disease doctor and they both were “in the know” about this rare disorder.

       Good luck to you. And isn’t wonderful to have all this support , experiences and knowledge by all these parents? Thank you Linda for this blog!!

       1. I agree get to a pediatric infectious disease doctor. We went to one last week after our son had his 9th episode. He gets them every two weeks. I can’t say enough great things about the Doctor’s at CCMC. He diagnosed my son fairly quickly and said it was great that I had charted the fevers and symptoms.

          We will be trying the steroids first. Hopefully that works. He said most kids out grow this by age 10.

          Good luck to you.

          Lisa

79. Thanks so much for sharing this information. Has anyone experienced respiratory issues in connection with the fevers? Our son, age 4, is on his third fever and every time viral-type symptoms seem to come with it. Coughing, stuffy nose, mucous. He has not really had time to recovery from the respiratory problems between fevers, so it seems like the same thing just keeps coming back, but I’m beginning to wonder. Thanks in advance for any information that anyone can provide!

80. Came across your post because i was looking for causes of monthly fever in children. My son had the first episode a month before turning 2yrs old. He is now 7. In between fever, aphthous ulcers, sometimes some white spots on his tonsils, he is very active. Thank God for your post. Im not alone.

81. I have been dealing with the same issues and my son is almost 7. It started when he was almost 2. The doctors wanted me to see the ENT and have his tonsils and adenoids removed but I am reluctant to do so. He has never suffered with sore throats. He has a fever consistently every month to every six weeks as of late. The temperature rises to 103.9 and continues for 4 days straight. I am just looking for any other input or advice. Thank you.

    1. My daughter had one really bad bought of tonsilitis and a few months later we started with the fevers. They were mostly every 3 weeks, once or twice spreading out to 5 weeks. She didn’t have any other symptoms other that the 104+ fever for 5-7 days. We dealt with it for almost a year before the PFAPA diagnosis. They first talked about steroids, which I was nervous about. But the weeklong meds along with antibiotics every month made me nervous too. Our ENT recommended removing her tonsils and adenoids. After some research we decided to go with it. The surgeon showed me a pic of what was removed. He showed me the infection hiding in them and compared to a pic of healthy ones. The recovery was challenging for just over a week but that was April of this year and we haven’t had a fever since! Whatever you choose, I hope your child gets some relief soon!

82. I am so glad I came across this.My son who is 20months old has been having high fevers 103-104 about once a month that last anywhere between 3 days and two weeks.He has no other symptoms just a high fever.The er doctors always send me home saying the same thing they said to you “it’s a virus”.My son just got over an episode just two days ago.I’m scared,I’m not sure what is causing this but his doctor is going to be discussing sending him to specialist next week with us.I just hope it’s nothing major.Like I said my son is only 20 months old and we have been dealing with this since he was 5 months old.Thank you for sharing your story as it brings some light to my situation.

83. Interesting diagnosis, and especially since I’m experiencing the same symptoms and I am a 46-year-old male. Just started experiencing these in the past year

84. I have never seen anything that makes me feel like i am you! For over 8 months now my 2 1/2 yr old daughter has been running fevers every month almost on the dot of four weeks. 105 fevers with meds every four hours because they would not last so i had to ulternate. Uggh hate to see her go through this and to think what the medication is doing to her body having to take so often! her doctor kept telling us the same thing. its a virus it will pass. I eventually went on to insist that she see somebody so they referred her to a DCS they took blood work which came out fine. We are now waiting for another episode to happen in another month so they can test her while it happens.. Gosh so wierd to see there are others out there! And yes us moms know our children better than anybody. Thank you for sharing!!

85. Thank you for this. We went through it for about 6 months before I got tired of the same, “he will outgrow it eventually, it’s nothing to worry about” speech and the ER visits, ENT, specialists… They sent us to an immunologist who pointed us in the right direction. Still having fevers, so we’re homeschooling.

    1. Hi Kathy,

       We are going through the same with our 34 month old son..He was recently diagnosed with pFAPA…Earlier he used to get it once in 6 weeks but now it has moved closer..He gets it 1 in 3 weeks..no idea how long this will continue..We are just super stressed and fell totally helpless…Will this ever go by its own?

       Thanks,
       Shweta

86. My 5 year old daughter has been having a frequent fever for 3 years. I’ve took her to doctors and emergency rooms, but still no answer. I just started a fever diary recently because a doctor from the ER suggested it. I’m hoping this is going to help us to get a step closer to a solution. I’m worried and tired of seeing my daughter feel this way. I just wish I could get her a doctor that will try harder to help us with this

87. This is all too common. My son has had recurrent fevers since last march. He had fevers every 3 weeks like clockwork march thru August. In September they went away. This May they came back. We have had every test done and infectious disease doctor says he is sure it is period fever syndrome. He wants to prescribe steroids for our 3 yr old. Our pediatric E.N.T. is willing to take tonsils out. We need to decide between steroids and T & A. Last year his fever always accompanied sore throat with positive strep in 60 percent of the time. Fevers always accompany an inlarged spleen. Prior to diagnoses they tested for cat scratch fever, lyme disease, leukemia etc. He tested positive for mono and our pediatrician said mono was causing it. They finally did the immunity test and it showed he had never had mono, nor does he have. The test was a false positive. Out little boy had temp of 104.8 this afternoon. We had appt with infectious disease specialist today and will see E.N.T. tomorrow. Hopefully, between both specialist we can determine whether steroids or a T & A is the best option for our son.

88. Did anyone’s child have stomach problems as a baby and need prescription formula? Did your child wake at night from a sound sleep? My 15 month old grandson had these troubles and is now plagued with the recurring high fevers.
    For people who have had luck with holistic people, is it hard to find ones who work with children? I had great success working with an adult one after autoimmune trouble related to metal and cement in my knee implant so I would like to find a child oriented holistic person in the Boston, MA area for my grandson. They do work wonders!!!!!

    1. My son is 20 months old and when he was younger he was on Nutramigen a prescription formula he also was on two types of medicine for acid reflux.He now has been having these crazy high fevers every month since he was 5 months old.I just wish the doctors could give me some answers.I hope all turns out well for your grandson and if you do end up finding something that works for him please share.Best of luck!

89. I went through the same thing as a child I was diagnosed with mediterranean fevers, its a genetic dissorder characterized by cyclical fevers that came like clockwork about every 2 weeks. The fevers did stop about the time I hit puberty. But ive been left with an immune system thats a bit on the low side. But it hasn’t stopped me from living a normal life. Best of luck!

90. My son only started with the fevers this past May. It is every four weeks and a fever of 105. Last time and this current episode we have had blood work done which was normal. Waiting on the mono test to come back but I refuse to allow the doctors to overlook the possibility of him having PFS. He is going to miss his first day of kindergarten tomorrow because of his sudden fever today. He does complain of stomach pain and when the doctor looked in his throat today she said it looked terrible but strep test was negative again. Going to set up an appointment with the ENT. I pray for all of you going through this and hope that I can offer some advise once we get to the bottom of these episodes.

91. Thank you for sharing this information. I think my grandson is experiencing the same thing. We will start documenting. Can you believe he got sick this time in Austin Texas and the emergency center found nothing wrong, no strep, no ear infection. This has been going on now for two or three months.

92. My daughter has PFS (PFAPA). It began at 8 months and went went through everything you have indicated. We did opt for Presnisone and it worked like a charm every time. At 23 months we opted for T&A and it was her saving grace. She is now a mostly healthy 3.5 year old, but does still experience stomach upset, mouth sores, and joint pain. I will take these symptoms any day over 105° fevers and Febrile seizures!

93. Thank you so much for sharing your story, because I to have turned to the Internet to try and figure out why my son keeps experiencing recurring fevers. His pattern is every 6-8 weeks, and I’m not sure if this applies but it always seems to follow some kind of activity. When I started reading your story I saw that you were traveling, and busy which would be exactly the recipe for a fever to occur in my son. Again this is just what I have noticed, I’m sure if it applies? His fevers started around the 18 month range and I am currently laying in bed with him right now flipping a cold cloth on his forehead every 2 min. Again I would like to thank you for sharing your story because when I finally read a story written by someone else about our experience, it was a great feeling to know that I wasn’t alone,,, or crazy! Summer

94. Hi I’m actually going through this my son is 2 years old and 3 months. He had a seizure on July 18 2014 it was the scariest feeling of my life and the longest 4 minutes of my life. He can get as high as 106.7 and not have a seizure but this time he did. I have been dealing with this since he was 6 months old and always a virus and sometimes yes it was a ear infection but other then that I have no idea why. I have spoke to the pediatrician and we will see infectious diseases doc and rheumatologist again. I have been logging his temp at am noon and night and he runs from 99.8 to 100.8 that is so not normal. A normal temp is 98.6. So if he’s all ready high then when he gets a temp it spikes. But this happens every 2 to 3 months. What are your son temps daily?

    1. My son’s fevers started when he was 18 months old. Actually almost exactly a year ago in July. The fevers came every 10-14 days and would last 5- 6 days. From October on they have been coming on every 2-3 months and average about 4 days. Prior to the fevers starting he did suffer from ear infections (has tubes) and reactive airway disease. He continues to have those issues in addition to the fevers. He has seen an ENT, an immunologist and a rheumatologist. Currently he is in another cycle. It started low grade on Wednesday 99.9. His spikes came on Thursday & Friday of 105. I did take him to see his pediatrician to confirm no ear infection and had his throat swabbed for strep in which all was negative. As of today he is still fevering 101.6. If he is still fevering on Monday with no other symptoms the pediatrician would order up a steroid for him. The last fever he had was the second week of May. He saw his pediatrician then as well and had infection on his tonsils in which was neither strep or mono, so he called it a virus, although his fever got up to 106.2. The doctors say he does not have periodic fever because he does not have other symptoms. They say he will out grow this. Basically his low grade temps run throughout the cycle with exception of his spikes usually after nap and throughout the night. He is extremely gassy with the episodes and when the fevers spike usually vomits. He has a decrease in appetite and is usually very fussy. We piggy back motrin/Tylenol, hydrate alot and have put him in a swimming pool or bath to bring down the fever.

95. So how many of your children have all the symptoms, some of symptoms or just the fever? With or without a formal diagnosis?

96. My daughter started having them when she was about 18 months old. We went through hell and back with our doctors because I began noticing a pattern. Finally I did what you did and monitored and wrote down everything for our pediatrician. After lots of testing, I was told she had periodic fever syndrome. This occurred for nearly 2 years and caused us many nights of worry… Until one day a friend of mine told me of her friends child who had the same thing with positive results at a local chiropractor. Sure enough, I went to him and he said he had seen over 300 cases of Periodic Fever Syndrome. He told me to give him 3 months and to try everything he told us to and her symptoms would be gone. Sure enough, 2 months later and she never had another outbreak (and it has been almost 3 years) She had non traditional acupuncture, alignment, and then a strict diet with limited dairy and hardly NO refined sugars. She also was given a vitamin and probiotic to take daily. They say that Periodic Fever Syndrome is inherited by two genes from the mom and dad side. My second daughter is now two and has shown the same signs of fever. We sadly did not keep up the diet that we did with her sister (and am so upset about it). We are beginning her on the same regiment starting this month so I will let you know how it goes!

    1. After years of having this fever, we recently found out we had mold in the house. In the walls, so not visible. Since remediating, our daughter has been fever free.

97. I am very thankful for this blog today! My son has had high fever since he was 5 months old almost monthly and he’s 13 months now. I’m going to start charting and keeping track in excel. He’s had so many tests run and they all show nothing!!

98. My son had this when he was three, diagnosed by Children’s Hospital after a long time of fevers. Good news, he grew out of it by the time he was 5.

    1. That is great news! My son in 5 1/2 and we are still getting them. Fingers crossed!

99. Hey! First off thanks so much for all of you sharing your stories! Do the fevers have to be like clock work? Can you tell me the length of times for your kids?

    Thanks a million

    1. In July of 2013, my son was 1.5 years old when the fevers began. They came approximately every 10 to 14 days that lasted on average 5 days, spiking as high as 105.7. This went on for about 3 months when they started coming only about every couple months with a duration on average of about 3 to 4 days. His most recent one was 2 months ago and his fever spiked to 106.2. Only thing we experience with these fevers is when they spike is vomiting and he seems to be extremely gassy and a loss of appetite when they come, except the last one they did find infection on his tonsils and it was not strep or mono. In some ways its like Jeckyl and Hyde. He is growing and thriving and because of this the doctors just tell me he will out grow it and want to call it a virus. Because he does not have any of the other symptoms, they will not diagnose periodic fever. My husband and I have opted not to test him further due to the amount of blood work that would be required. He has already been through too much.

100. Hi so I am in the beginning stages of what we believe to be pfapa for our 21 month old. We have only had 3 episodes so far but the problem we have is she has a seizure each time. I pray we can get a diagnosis and treatment soon. THANKYOU for sharing your story it helps hearing another mom sharing her journey.

101. This sounds an awful lot like my son. Fortunately it only took our pediatrician about 8 months to realize what was happening and refer him to a rheumatologist. At this point we have now spent about 6 months and seen several types of doctors and put him through a million tests and come up with nothing. We DO know that his blood shows a constant inflammation and anemia. We’ve done genetic testing and are waiting on the results. At the end of this month we are doing an MRI and scope (both ways) within a week of each other…..which I am not looking forward to as he’ll be going under anesthesia both times and he’s not even three years old 🙁 I freaking hate whatever is putting him through all this.

     1. My husband and I opted not to put our boy through all the testing. I currently have 4 orders of blood work that I have never had completed of course with his peds knowledge. because he is growing and thriving the doctors just tell us he will out grow it. His fevers are less frequent and the duration is less. The last one he had was about 8 weeks ago with a high of 106.2. Everyone has a different way of handling the sickness and trying to get some resolution. You have to do what is comfortable for your situation.

102. I thought I was the only parent with a son like this my son is now 18 months old and still runs a fever every 6 or 8 weeks! I have been to many doctors and they all tell me the same thing;Everything is okay he is a healthy boy ,but never tell me why he has a fever. I thought i was over rreacting, but my son has all those symptoms ever since he was 3 months old. Its so hard having to deal with this when doctors give me no explanation to why its happenin.

103. Linda, how is your son doing now? I have not seen a post about this for several months. My daughter just got diagnosed with some kind of recurrent fever syndrome, although they were unable to give me an exact diagnosis without more expensive and likely inconclusive bloodwork. She has had recurrent fevers (every 3 -5 weeks) now for about a year (they began when she was 6 months old). They last about 3-5 days, but she has no other symptoms that typically come with PFAPA or some of the other syndromes (beside from elevated CRP levels in bloodwork). She has a few days of clingyness and fussiness and then returns to her normal happy self. The doctor said these can last for years, but she is likely to grow out of it at some point. It saddens me to think that she could be experiencing this throughout her childhood. Have you heard anything hopeful regarding when children typically grow out of this? Thanks for writing about this!

     1. My son been having pfapa since he was 10 months old and hes 19 month old now and he still have them and the dr gave him steroids and hes been on them since he was 10 months old and it dont help my son

     2. They can have the pfapa up to there 15 years old and my son has pfapa ans seizures and asthma and its hard to deal with but I been going thru this since he was 10 months old and now he 19 month old now and he still has all of it and the doctor aint doing anything about it

        1. Oh my gosh this sound so much like my daughter. We are only 3 months in though. Scares the hell out of me but luckily we have doctors following her just still no answers until she has more of them. Which means more 30 min seizures and ambulances.

104. Thank you for sharing your son’s story. I would like to join the “group” as my 4 almost 5 year old daughter has been experiencing low grade fevers for over a month. The fever goes away for a few days, but has always come back. Tonight it was 100.9. F

105. All three of my boys have Periodic Fever Syndrome and two have been cured by tonsil removal. My youngest is not a year old yet so we have to wait on the tonsils. In the middle of an episode right no with him. Not fun!

106. My soon to be 4 year old has been experiencing this almost identically. Ever since he was born. His fevers would skyrocket. When he had a 105 for 5 days the er told us he had an infection. My son has had other medical conditions and needed a shunt so we thought his shunt was blocked. It has been removed and still experiences this. Currently he’s at 101.4 for 3 days now. We have seen an infectious disease doc who eventually left the practice and now we are forgotten. She thought maybe he had cyclic neutropenia in which his blood work seemed like it but she said the results were based on an adult scale not pediatric. She is a pediatric infectious disease doc why does she have an adult chart? Ugh I’m so frustrated and now it just seems like the doctors don’t care

107. Hi All. I have been reading all your stories, I feel relieved ! My daughter for the past year keeps having recurring fevers of 39.7 roughly each time, sometimes higher & lower but nearly always 39.7. Paracetamol, baby iburofen barely help & the fever plus May being very unwell in herself last for a week mostly. Sometimes it can pass after 5 days. Sometimes there are other symptoms with it like tummy pain, sore feet, swollen glands, loose stool or constipation but it always begins with the fever. I have seen the doctor so many times. Bloods have been tested & normal, after a urine infection May then had an ultrasound of her kidneys, no abnormalities, waited the long wait for the paediatrician referral which again resulted in nothing apart from being told its her age, viral, she is a well child, which is very very true when she is free from this fever. She literally deteriorates over night. No lead up just a very poorly looking girl who is suffering. I am so worried about her. She is my 3rd & my second pregnancy & my little boy Ralph was born with the 22Q 11 deletion syndrome which has been heart breaking & a very rocky road to begin with so having May constantly unwell with no reason attached scares me. The fever firstly got to a stage where it was every other week, now its every 4 but the last fever was early hours of Tue morning lasting until last Saturday & again today May is generally feeling & showing the symptoms again. May has been given antibiotics so many times due to swollen glands etc & yes after a few days it eventually helps it pass. I don’t want her constantly taking antibiotics. I hate seeing her so unwell. What do I do next if it is the case she has this fever syndrome ? Ive seen the paediatrician who would not give me a follow up, attended a&e so many times. My son is under great ormond street & has been from a month old. I wish she could be seen there although getting her a referral with no symptoms other than a high recurring fever & a mum that looks like she is over reacting is challenging. May will be 3 this August coming & the fevers are still so ongoing. I just want to know she is safe with her health as it is so worrying watching this happen over & over again. Will she out grow this eventually if this is what it is. Can a test be performed as I was also reading other blogs about this being hereditary ? Any responses would be much appreciated. Thank you Katy.

     1. Hi Katy,

        I feel for you! It is very frustrating to watch your child not feel well, but you know when something isn’t right and don’t let the doctors tell you otherwise. I have two daughters who probably both have Familial Mediterranean Fever. Any recurring fever should be taken seriously and tests performed to find the cause. Have her blood tested for inflammatory markers such as CRP and ESR and SED. Bring her to the doctor with every fever so they can have a record of the temperature and the date it happened to establish a pattern. Keep a calendar on your own with fevers and symptoms. Get her cultured for anything that looks like a UTI or strep but only put her on antibiotics if they can prove its a bacterial infection. My daughter presented with both of these over and over before we knew what it was, but the fact that the culture came back negative every time helped to prove there was something else going on. Its more evidence that they need to look further for the cause. If its not a true infection, it will resolve without medicine when the fever breaks. There is a panel of hereditary tests for periodic fevers but it is expensive and insurance doesn’t like it. And you can have a false negative anyway. Ask your doctor to start considering each periodic fever and see what can be ruled out through bloodwork and symptoms. That usually gives them enough of a picture. Good luck and I hope you find some answers soon!

        Sheri

108. So nice to know I’m not alone! Been dealing with PFAPA for many years between both kids and I’m spent, to say the least. It started with my daughter (10) and continues with my son (6). She seems to have finally outgrown it for the most part. Now she just gets recurring canker sores? My son however, had a year reprieve after the ENT agreed to remove his largest reactive lymph node in his neck. Sadly, the fevers have returned and I feel so bad that he misses out on so much! The ENT has refused my suggestion of a tonsillectomy. So, onto a second opinion. I’ve tried several alternative treatments but I feel like there has got be something out there to help these poor kids other than ‘waiting it out’! The search continues… Wish you the best 🙂

109. Thanks for sharing. My daughter is currently in the midst of her third fever in less than 2 months. I could find no info online. We are heading to dr today. So hard to not know what is going on.

     1. If your on Facebook there is a community for periodic fever syndromes. Unsure but it could be helpful.

110. Thank you for this…my granddaughter has chronic fevers just as you described . I feel ad though our doctor thinks my daughter and I are crazy. I will definitely tell my daughter to start charting my granddaughters fevers and see if this helps the Dr’s acknowledge the problem.

111. I know this is very hard on your son. My son and I suffer from Familial Mediterranean Fever and it took five years and many specialist before he was diagnosed. I will join you in your effort to raise awareness.

112. I had no idea that this existed. My son has been experiencing similar episodes and, while I hope that it is not the case, I am going to start charting his fevers and complaints to ensure that I have record of it in case it becomes pertinent. I’ll keep all of you and your children in prayer!

113. This post describes my son to a tee. He started with fevers about every 2 weeks back in July of 2013, when he was about a 1½ years old. They would come like clockwork. The frequency and the duration have improved but he still has them. They have not diagnosed him with this because he does not have all the symptoms of a periodic fever. The doctors want to call everything a virus and tell me he will out grow it. But they admittedly don’t pursue the problem due to the fact that he is growing and thriving. My husband found this blog post and it brings comfort to know we are not the only ones struggling with the condition.

114. OMG! Such a relief to know I’m not alone! My youngest son is 2.5 and has been getting high fever once or twice a month with no other evident symptoms except achiness. Every time we go to the doctor we get the dreaded “its a virus” response, so frustrating! Thank you for your post, I’m going to start tracking fevers like you mentioned and look into this further. Thank you thank thank you!

115. I am 23 years old, and I have lived with those exact symptoms of random extreme fevers since I was 19. I have gone through every test in the book from bone marrow aspirations to expensive genetic tests to determine if it was FMF all negative. The best doctors in my area have tried their best to come up with a diagnosis, but one by one all have failed. My mother has been helping me when I get the fevers it has completely wrecked my college life because for about 4-5 days I am infuriatingly useless and bed ridden, and it can happen monthly or even sooner as of now, but once it’s gone all that’s left is the weakness from being in bed for so long, and the fever leaves no trace.

     My mother keeps track of every single episode and the temperatures dating back to 2010(she has quite the stack of papers). While in my case through the years the fever has been incredibly random, as of late the fevers seem to be coming at a faster rate . I used to get them every 2,3 and the longest I have gone without an incident is 6 months, but that’s not been the case lately anymore. Matter of fact that’s the reason I ended up here it came up when I googled “random fevers” because I feel the fever creeping up on me right now. As you can probably tell by now after 4 years dealing with this and the battery of tests and hospitalizations that have come because of it, my desperation level has risen, but ill be making the 3 hour drive to John Hopkins to see one of the few specialist in the country on this type of unexplained random fever (Supposedly he’s really good) the fastest appointment I could get was for July. I don’t have much hope in the specialist after all I have been through to be honest, but if it does make a difference I will post it here. At this point I feel like my only hope is this thing disappearing as randomly as it came into my life.

     1. I didn’t want to post an update until I was sure I had something worth posting. So I went to John Hopkins which paid off in a big way. I was very skeptical of driving hours there, but I was desperate after testing for everything with nothing to show for it for years, so I drove all the way there to see the doctor. He told me he would prescribe me some steroids in large dosage which he wanted me to take when I felt the fever coming on to see what would happen. The steroids cut the fever attack right off I’m talking about completely gone by the second dosage the next day.

        The doctor in Baltimore, and I kept in touch and he sent me to the NIH later in 2014(at the same time as the ebola nurse was there), and I was put on a trial of sorts.

        The steroids worked very well, but the doc said they where a band aid not a cure and my doctor was worried about the side effects the steroids could have in the long term(I just felt hyper). So he put me in contact with some wonderful people at the National institute of health. They put me on this trial and said the Kineret drug they where going to give me was being used with success in kids with periodic fever syndrome. Going by what they told me they hoped the drug would not only stop the attack but trigger whatever it is that triggers in children that makes them grow out of these fevers that didn’t get triggered in me.

        So my instructions where to take the drug Kineret the next time I felt sure I was about to get the fever,the medicine is injected directly into the stomach. Sure enough a month after I went to the NIH i got the fever again. That time the dosage I took was not sufficient, and It barely had any effect, since they’ve only used this in kids nobody was sure how much I would need.

        I got an episode pretty fast again after that one it was the beginning of this year. That time we tried a higher dosage which meant 2 injections the first day and 2 the second only if I still felt symptoms if not then 1 , and then 1 the third day. Yes five injections total right in the stomach . It was not pleasant but I knew it was necessary I needed to give it the best shot I could.

        It’s been almost a year since then, and my last fever attack. I still got unused Kineret in the fridge. After dealing with the fevers for 5 years I finally have a bit of hope. I don’t want to say I am completely out of the woods, but it sure looks like the Kineret helped not only to stop the attack but to make them go away completely.

        I got unlucky or lucky? by being a very rare case which made me useful to their trial. Hopefully they can turn all the data they’ve collected into some kind of procedure for kids with this thing.

116. We (and our pediatrician) believe our little girl have PFS. Her fevers were not nearly as regular as some of the kids reported here but for awhile it was every 1.5 months or so. When we had her blood taken we found out she was low in Iron (“on the low side of normal”) so we started iron supplements. Apparently iron has been linked to immune support and PFS. Anyway, it helped us and thought I’d share in case others wanted to discuss with their physicians.

117. My son just turned two a few weeks ago. He is on his third round of fever. They occur every 2 weeks on the dot. The strangest thing, his also began on a family trip (to visit my parents) in San Antonio. We have not seen a doctor, and we have no diagnosis, I just stumbled across this while looking into his symptoms.

118. I cannot even read all the responses but if it hasn’t been mentioned and you haven’t considered it….please consider a tonsillectomy!!!! My son developed periodic fever syndrome around the age of 1. It took months before the pattern clicked, because hey, toddlers have fevers all the time. But this was every 2 weeks, on the dot. It was becoming eerily predictable. Anyhoo…he had a tonsillectomy right after his 2nd birthday and it was like magic.

119. Being a responsible father I should really thank you. I understand now why my daughter is faling sick every month.

     Kindly help me how you diagnose this FMF?

     1. Hi Dinesh,

        Did you get your daughter tested for FMF??? Can you please share the details??

120. Thank you for letting me know I am not alone with my daughter. Her fevers started at 5 mos. (105 degrees also, no seizure, but blue hands and feet). she is 10 years old and they still go on. We thought she was outgrowing her every 2 week cycle when she dipped to one every few months while she was 8 and 9, but she’s back to a pattern of every 2-3 weeks now since November (2013) when she turned 10. I cried after reading your post. (Still crying.) Thank you. I wish you and your son well.

121. My daughter is just 18 months she is suffering from the same disease of PFS after every 30-45 days. It last for 3-4 days, and fever comes after every 3 hrs. and gradually at a incremental gap of more than 3 hrs. Fever hits at 106 F, and at very rapidly fast pace. We use drug Ibucon and get ready with drug before the drug hits her drastically. Everyone should refer to these two sites –
     http://www.healio.com/pediatrics/curbside-consultation/%7Be00b1d3f-51ed-4f68-92b7-ad893e15fda5%7D/a-2-year-old-patient-has

     and

     http://www.parents.com/health/fever/fever-fears-a-guide-for-treating-fever-in-children/

122. This is my first internet search on this. I only just realized my DD’s have been happening more often. Last weekend she had rotovirus, but the weekend before she had a random feve . Today is another random fever. Thank you, THANK YOU for posting this. And thank you for the poster who wrote about using a period tracker. As DD is laying and crying on me right now I’m going to d/l the app and start tracking.

123. To everyone reading this blog (I have commented on here before) get your childs tonsils removed. My daughter had hers taken out 2 years ago after 18 months of Period Fever and the fever stopped over night. Don’t carry on suffering, there is an answer. I live in the UK and its was easily remedied when I (not the doctors), finally diagnosed it and pushed things along.

124. Hi, Linda. Thank you for posting your story. I guess you could say we are PFAPA veterans. My son’s story started the day after his second birthday in 2001, with a febrile seizure. For years, I visited the doctor when his 104 degree fevers would go on for 4 days straight with no other symptoms, only to be told that it was a virus. Unfortunately, other information wasn’t available and the only thing I knew to do was take the doctor’s word for it. We lived day-to-day, month-to-month not realizing there was a pattern or that I should chart it. It wasn’t until he was about 10 years old that I realized that he had been sick on Halloween, Thanksgiving, Christmas and was sick at the end of January — all about a month apart — that I mentioned it to the doctor. I was lucky this particular doctor actually took some interest in it. After his diagnosis, I found out through research that it tends to go away when the kids hit puberty. I had spent almost 10 years alternating medication day and night every time he would get sick. We tried steroids (which worked immediately and really well, except that you worry about the side effects). When he was 12 years old, I was just about to the point of requesting a tonsillectomy. Then the fevers just stopped. We have gone for 2 years without any incident. I have noticed that although he isn’t sick with the regular fevers anymore, he does actually get ‘colds’ and other sicknesses now. Our pediatrician tells me that he wasn’t ‘sick’ before because his immune system was so amped up because of his condition. This particular week, he has been sick with a cold with a fever, and even though I KNOW he is truly sick, it scares me that he has had a fever for 4 days straight. I don’t want to go through that again. I don’t want HIM to go through that again. So I am actually online now, looking for information on what to expect after PFAPA relents. I have read that sometimes it recurs in adulthood. I’m so afraid it will come back one day or that there will be other effects that we aren’t aware of yet. Our doctor has had my son on a zinc supplement for 4 years now, so apparently there is some connection there. So thank you so much for sharing your story with those who are going through this terrible ordeal. I only wish there had been more information about this 10 years ago. I think that if I was aware of this when he was 2 and what the future 10 years would hold, I would have definitely tried the tonsillectomy, even if it was not a guaranteed ‘cure.’

125. This is amazing I found this blog! My son is 5. and he has constant fevers and all we get from the Drs. ER Pediatrician is its a viral fever.

126. OMG! I cant believe! My son has exact same! We have fever for 5 months now, every 2 weeks. We had checked him for everything, all good! However, still …every 2 weeks 102-103F.

127. I can’t find my previous most so I’m sorry to reiterate. My daughter was diagnosed with PFAPA after a 102-105 fever ever 3-4 weeks. We were recommended that the tonsils and adenoids should be removed. We scheduled the procedure but then had 7 weeks (yay!) of no fevers so we contplated holding off. After a lot of back and forth we decided to do it. After the procedure, the ent came out and showed me a picture and said they were “big blobs of messy infection.” He said he’s confident that removing them will stop the fevers and asked if he can follow up with us. Apparently he’s doing research about PFAPA and wants to have more documented cases. I’m hoping for the best and happy to share our info if it helps others! Fingers crossed!

128. I understand! Our daughter has suffered fevers of over 40 degrees celcius for over a decade now. The specialists cannot diagnose it specifically and we have been on a mystery course for over a decade. We are currently having gene testing done after years of hospital admissions. I genuinly feel your distress and hope your son outgrows this, just as we are hopeful our daughter outgrows her fevers….however at almost 11 our hope is fading.

129. We are on the road to getting my 2 year old daughter FINALLY diagnosed! I’m sure it’s PFAPA as her tonsils are always inflamed during her high fevers which are every month to the date. At first she had a lot of ear infections that resulted in her getting tubes. I thought, “finally, the fevers/illness will stop”. Unfortunately a month later the fevers were back, although without the ear infection. The months following she had an episode that always started with a slight change in temperature, that was our cue. The next day her fever would rapidly rise to 104. Motrin is the only fever reducer that lowers it, but it rises within an hour of the next doses time. She vomits when her fever spikes. Thankfully she has not had seizures. Her pediatrician assumed for those months (despite rapid strep being negative) that she had strep since her throat looked awful. He’d prescribe antibiotics and after a few days it would pass, only to occur again the next month. The ENT did not want to take her tonsils out much to my frustration and tears. I KNEW in my gut months ago that she had PFAPA. Getting the doctors to agree has been so difficult. Right now we were given a steroid and her fever was gone immediately. Her pediatrician is in contact with an infectious disease doctor who is in agreement. I have to chart the next episode and they’ll go from there. My pediatrician also disagreed with her ENT about not removing tonsils. I believe that will be endgame for us if I can ever get the doctors there too. Her pediatrician easily found the monthly pattern as i take her in every single time she spikes a fever. I cannot agree more with everyone’s advice to document everything and chart consistently! It really is evidence! Also do not give up fighting for your child and for answers! Even with mentioning this to them months ago, it has been like pulling teeth and she has an amazingly thorough pediatrician! Fight fight fight! Don’t give up and do not let anyone make you feel like you are paranoid or delusional. Trust me, I’ve had people pat my back and tell me to just trust the doctors… which I have; but without substantial research and prodding on my part. Trust your instincts and stay the course! Thank you for beginning this post as the camaraderie is such an encouragement and source of commiseration!

     1. I meant to say “but NOT without substantial research”. I was not going to sit back and not have an active role in figuring this out. Trust your mommy gut!

130. Same thing is occurring with my daughter is been about a month now.her body is alway warm .seems like a fever but when I check the temperatures is not really a fever but to me her body is warmer then usually.it started about a month oge .I never toke her to get checked out but after reading your blog . I will take her to see a doctor .because she is not really showing any signs of illness but I will have doctor look at her. I hope your son gets better and I pray his fever goes away

     1. It’s 1:55am and I’m researching recurrent fevers because my 10 year old daughter has yet another fever. This time 101.2 (not very high) but is getting them every 3 – 4 weeks (sometimes almost as high as 106.0). This time and one other time it seems to be going down without medication. Took her to pediatrician last time and was told it was viral. Starting to document these episodes. She also seems to have cold symptoms along with fevers (runny nose and sneezing). Is this the case for anyone else? Please let me know. I seem to get sick after she gets sick. That is why I thought it might have been flu in past. But know starting to wonder. I will continue to document. LC

131. My daughter has been having monthly fevers for about 2 years now. She is 8 years old. Her fevers are low grade…typically 99.8-101, but cause a drastic decline in activity, facial flushing, extreme fatigue. It ranges from every 4-8 weeks. She’s also hyper mobile and gets frequent joint pain. I have her on the waiting list with a geneticist as I’m thinking it is Ehlers Danlos. But now I’m not sure! Thank you for sharing your story.

132. My son is now 6 and has been struggling with this since he was 3 months old. The older he has gotten the less they arise. Keep up that hard work Mom. You’re doing good and this is a great topic.

133. OMG I am in tears finding this blog, knowing I am not alone with my 8 year old son having been diagnosed with periodic fever syndrome. I have never met anyone that has even heard of it so this is sooo big for my family and I. To make a long story short my son started with the high fevers and stomach pain and vomiting when he was 3 (it happened like clock work every month). we went back and forth to his pediatrician for over six month each time they would say it was a virus. I finally starting seeing the pattern and started keeping a log of it. Poor guy was just constantly sick with no energy. I started to began to think he had cancer or something serious..that is when he was sent to infections disease specialist and we got some answers and blood work. Fast forward to today his fevers tapered off the last two years virtually didn’t get that many episodes. But in December of 2013 the episodes came back with a vengeance getting them every month missing so much school. But it is worse now it hits him really hard he has no energy for days after the fevers go away and the pains in his stomach are much worse and he can’t even eat. It is scary to him and I worry so much and think something else is going on and what are the doctors missing. So he went back to the to the specialist on 4/4/14 and had massive blood work done we are waiting on results to put all the pieces together…so my questions to other parents what are some treatments for this syndrome? Has anyone tried any medications or b-12 injections or anything that have helped?

     1. I was basically blown away too when I ran across this website and heard other mothers with the same fever issues on their children. I thought this was some huge mystery. His pediatrician has even been pretty puzzled. I have been making sure it’s logged now. Curious to see my son’s pattern. I have kept it to myself, but have been worried about cancer too. Even looked up symptoms. I am so frustrated, I thought I’m gonna try my own research! I am not sure if my son has any joint pains. But her certainly was acting like he had stomach pains the other day. And being 4 years old, I can’t really get any answers out of him. Sometimes he lies and says it’s his ear and then they turn out perfectly fine. But most of the time he says nothing is wrong, because he don’t want to go to the dr. or hospital. I am very worried about him being around other kids and all these germs, and/or missing a lot of school. I hope you get some answers soon with your son given all the blood work you all just did. It’s horrible that you thought they were going away and are now back and all the stomach pain he is having with it. Good luck to you all. This must be a rare thing since the doctors don’t even mention it. I have just felt so in the dark on it. It is great to have a place to talk about this to people who understand this.

134. My heart breaks for all of you and I can’t believe there are so many of us who have to watch our children suffer! My daughter was diagnosed with Familial Mediterranean Fever a year ago after over 3 years of fevers and other symptoms–sore throat, mouth sores, SEVERE stomach pain, achiness everywhere especially her legs, feeling like she couldn’t breathe, feeling like she had a UTI. The doctors couldn’t believe the list of symptoms. Her stomach pain was so severe they took out her gallbladder but she woke up from the surgery and said it still hurt!

     WITH A MEDICINE CALLED COLCHICINE THE SYMTPOMS AND FEVERS HAVE GONE AWAY. She is a little achy and tired a few days a month, but she has her life back and can go to school and enjoy her friends again! Don’t just wait for them to outgrow it–if it is FMF the fevers probably won’t go away on their own but FMF can be treated.

     The rheumatologist said it was more likely that it was PFAPA because of her sore throat and mouth sores, but that it could also be FMF. He did bloodwork to check her inflammatory markers–ESR, SED, CRP. These are high during a fever episode then quickly go back to normal. FMF is an auto-inflammatory disease. Then he put her on a trial of colchicine. She would only respond to this if it was FMF and he didn’t really think it would work but it did!

     I would be overjoyed except that my other daughter is now getting a recurring fever, but they don’t believe me! Document everything, bring them to the doctor every time they have a fever even though it’s frustrating for them to say it’s just a virus! Be persistent–you know when something is wrong with your child! See a rheumatologist. The genetic testing only shows the most common mutations and ours didn’t show anything, but colchicine has given her back her life! Beg for a trial of colchicine.

     Good luck to everyone! Hang in there!

     1. Sheri I am glad you got to the bottom of your daughter’s fevers. It is so aggravating when they don’t believe the fevers. My son’s fever does not show up at the Dr. because of the type of themometer they use, and the fact that the fevers start more in the evening time always. Strangely go down below normal in the mornings. He always keeps a low grade fever, mostly every day. I am happy that your one daughter has been fever free! But I am sorry, I hate to hear it’s happening to your other daughter and they are not listening to you. Good luck!!!

135. my goodness! i thought i was alone with these mysterious fevers. my son who is 4, was just at the hospital for a 105 fever last night. but this is constantly. he’s recently in the last couple months had 2 fevers of a little over 104. and it just so frustrating to hear, “virus” every dr./hospital trip. and every single week pretty much he has a fever of around 101. but is anyone else’s child experiencing these fevers in the afternoon/evening? my son never seems to have one in the mornings. it’s just strange. and they are wanting him to see an immune dr. he has an allergy/immune dr. now that is not doing any good. they are also suggesting a hormone dr… of course i have to call them b/c i think they think i am making these fevers up b/c usually they don’t show up with the themometers they use. like at the hopsital last night they said it was 98 and insisted they recheck, turns out it was still over 101. this is just getting so old and need a name for it. he hasn’t had any bloodwork done checking his immune stuff etc. for a couple years. his dr. will not even give him his 4 year vaccines b/c they don’t feel it’s safe with his temp. he’s not able to get his allergy shots most of the time b/c you cannot get them with fevers, it makes them worse. my son also has a lot of food allergies. peanuts, shellfish, milk, pepper, mustard, wheat.. the list goes on. he is allergic to amoxcillin also. he is around 29 lbs. and stays pale. very picky eater. he’s on a vitamin. but i just want some answers, a name for what is going on. they always check his ears, urine and do a strep test. same old song and dance. these low-grade fevers have been going on for a couple years. and now he’s starting to get high fevers quite often. he cannot go 3-4 weeks without some viruses. he was running a fever almost the whole month of march. he has had some bloodwork done at the hospital recently. nothing major, just the cbc i think. he’s had 3 chest x-rays recently. i just feel like somebody is missing something. if the dr. don’t know, they should send him to someone who does know. need another opinion. also my son gets cranky on/off, appetite pretty much disappears for days at a time. then when he gets his well spells, he will eat like a horse and be so jolly. these fevers have him laying around and just not getting to enjoy things. never fails, when i plan on taking him somewhere to get away.. like an indoor waterpark recently. he had almost 102 fever the whole time with chills and not feeling well. it is nice to find a place where other people are experiencing these episodes as well.

     1. Stacey I understand your frustration. My son will be fine all day and then in the early evening will start getting sluggish and not want to eat. He goes from fine to 102 in no time. Sometimes the fevers go away by morning and sometimes they hang around for a few days. For us it is a once a month occurrence and it is more frequent if there is a virus going around. The forehead thermometers that the hospitals use aren’t always accurate and sometimes don’t pick it up. I have to insist that they use a digital thermometer in his mouth. It has been so frustrating hearing all the time that he just gets viruses easy and that I am just being paranoid. My son just turned 5 and every year we have to reschedule his vaccinations at least twice because of fevers. We are going next week for his 5 year check up and I am going to ask his doctor about periodic fever syndrome and a possible referral to and ENT. I have heard that many people have good results having the tonsils or adenoids out. I wish you the best of luck with your little guy.

        1. Thanks Melissa, and good luck with your little man too! My son usually gets hyper more at night. But the day it was 105 he was very calm and quiet and not himself. You wouldn’t think there would be sooo many viruses out there. It’s like ok does he get one every time we leave the house? My mom babysits him while I am work, he doesn’t go to daycare. He is not around other kids much at all. Mainly just his cousin. (I dread when school starts) He is supposed to get a couple more labs done and get to the immune dr. now. I may mention this fever sydrome. For years, he cannot go a whole month… without having some virus. He went all day without a fever yesterday. Acted fine, ate even. 101.6 before bed. But he acted as normal as can be. The tonsils sounds like a good start to curing it. But I would be paranoid as heck after the incident with that little girl who died over getting her tonsils out. Or almost did, ended up brain dead. I haven’t heard anymore on the story but that just horrible. This isn’t the first time my son has had to wait on vaccines either. I was hoping he could get his allergy shot this week.. but not looking so good now. Anyone can feel free to email me if they would like to talk. Sweetie122889@yahoo.com.

136. My daughter now 6 who started having fevers when she was about 2 years old still suffers from these fevers. After reading this blog we have seen her pediatrician and the ENT we have chosen to remove the tonsils and adenoids in hopes to resolve this problem as others have had success. She is scheduled for May 8th I am crossing my fingers that this may be a cure.

     1. We are almost 2 months post surgery and no fever it is still early, but I would have to say she is already looking more healthy.

137. Our son also has periodic fever syndrome. However I noticed over this last month that he is getting fevers once a week for the past 4 weeks. We did go the steroid route and that does either stop the fever the next day or shortens it couple of days. We have our concerns about the steroid as well. I believe it’s the reason he’s gained almost 30 lbs in one year. The doctors of course say no to that, because they say the dose isn’t high enough. That’s the only thing different that has been done in the last year. My question is have you noticed an increase in your son’s fevers from once every 3-4 weeks to weekly before? Thanks for any input.

     1. Lacey,
        We have had to same problem with our son. His fevers increase anytime there is a major virus going around or if we have had a particularly active week. When they do increase and start showing up weekly, the fevers are usually lower and shorter than a regular episode, unless he has an actual virus. All we can do is give him ibuprophen and wait it out and give him rest time.

138. This helped ALOT! I’ve been searching for any kind of answer on why my son has fevers abnormally with no signs of illness. I’m thinking my son might have this not positive but i know now that i need to chart it to come to a conclusion. Thank you!

139. I can’t thank each of you enough for posting your stories. My son started developing high fevers at 4 weeks old and still gets them regularly. The fevers have ranged from 101 to a startling 106.5. He is now 5, been to the hospital multiple times and has had 2 spinal taps and multiple rounds of blood work that always result in the diagnosis of “simply a virus” it has been frustrating. He is going on his 3rd day of a fever over 102, just like we go through every 6-8 weeks. Thanks to this blog I am going to make an appointment with his pediatrician and ask about this. I am so glad to hear that others go through this and that I am not crazy for thinking something is wrong.

140. My son also has this condition. We took him to doctors and even special disease doctors to try and figure out what may be wrong. He was diagnosed with Periodic fever syndrome. He is actually having an episode right now. Very helpless feeling when temp gets high.Ibuprofen and Tylenol have been a god send. He used to have these fevers every month but has grown out of them the older he has gotten. He is now 6 and has fevers only when we decide to go out of town, jk. He has fevers maybe 3 or 4 a year now. My sons mother said that her brother use to experience the same fevers when he was a child and eventually grew out of them. Thanks for article. Enjoyed

141. So I’m just looking for some guidance. I’ve commented before and after 8 months my daughter is scheduled for a tonsil and adenoidectomy mid April. But we’ve been fever free for six weeks now (knock on wood all over the place)! So my thought is, should we delay the surgery and wait and see or are we just delaying the inevitable? My husband wants to delay and I definitely don’t want her to have surgery if she doesn’t have to. But I’d hate to wait and have another bad episode. Thoughts?

142. Thank you for posting. Our daughter wS just diagnosed, and her fevers are accompanied by vomiting. Is there a Mediterranean descent on your film? Our dr is telling us she feels as though it’s unlikely for her to have FMF bc of genetics, so she most likely has PAFPA. I’m trying to research as much as possible, and your post was a nice source of encouragement!

     1. Hi Jen, so sorry to hear about your daughter. My son vomits also during episodes, but after careful review of his past episodes we think most times it was due to giving him ibuprofen on an empty stomach. In January he vomited 3 times in one night, fever was very high, and we just kept trying to give him the meds, plus he was drinking milk (bad combo). We called our pediatrician’s service, and the doc on call suggested acetaminophen instead, because it is gentler on his belly, especially when he hasn’t eaten in a while. Just a thought. I feel terrible that it took us long to figure this one out! Good luck.

143. Since my first post here on February, Matty has had only one episode, he seems to be on a 6 week cycle which is a huge step- up from every 3 weeks when this started a year and a half ago. I can empathize with the frustration that families have shared about having their doctors tell them its “viral” and feeling “crazy” when we know something is wrong with our children but no one seems to think so. I experienced these feelings yet again with this last episode. It was Matty’s most mild one yet. His highest temp was 100.4, barely considered a fever, but up from his usual 98. All of his other symptoms were present: droopy sick eyes, irritability, body aches (he asked that medicine be put on his belly, feet, legs, fingers, and I just rubbed some baby lotion on him and that seemed to do the trick), his breathe change, restless sleep, decreased appetite, and a mouth sore (which I found to be a sign that he has PFAPA and not FMF as previously suggested by his pedi.) He also had/has a red itchy rash in his groin that is finally starting to go away. Has anyone experienced this a rash? We only gave him Tylenol once because he seemed to be very achy, but his mood was pretty good. When I shared this with our pedi she said “If he doesn’t have a fever then its not an episode.” My husband and believe otherwise, we know what we saw, and I am disappointed that she dismissed this as “probably something that toddlers just get.” Just needed to vent, thanks for listening. One last thing, has anyone else experienced such a mild episode?

     1. Has any of you children been tested for RHEUMATIC FEVER. Most of the symptoms are symptoms you guys have mentioned. I read that rheumatic fever, if left untreated, can cause permanent damage to the heart valves, that’s is called rheumatic heart disease. The best way to stop those fevers is to have regular penicillin injections on time, which are given every 28 days.. Which is pretty much how long there is from fever episode to episode. I am having my daughter tested for this, since she as well, as had fevers every 3-4 weeks for the past year.

144. I just found this and I thank you for posting. My 20 month old has had 105 fevers every 3 weeks. We just got discharged from our Holden’s hospital where I used to work with no answers and no one listening to me. Today he is starting to run yet another fever. I just feel helpless. Glad to know I’m not alone

145. Thank you so much for your story. I’m going through this with my 3 year daughter. I really thought I was going crazy because I noticed she was getting fever every couple of months. I thought maybe it was because she just started day care but she’s been in day for almost a year now. And she get high fever for about a week long.

146. My 1 yr old granddaughter is having something like this but not as severe as some who have posted. She will be fine at night and in the morning when she is with us. We take her to daycare during the day and when we pick her up, she is running a fever. We get her home and give her Motrin or Tylenol, do the normal nightly stuff like feed her, bathe her etc…and she will be fine the rest of the night and morning. Then she goes to daycare, we pick her up and fever again. So I just figure she is stressing herself out so much because she is at daycare, that it makes her sick. So my son (her dad) is staying home with her today to see if she runs a fever. We had started documenting daily on a dry erase board but will start documenting on a spread sheet. One step at a time.
     Good luck to others experiencing this and other more severe forms of PFAPA.

147. This sounds like my son.

148. This made me cry because it sounds EXACTLY like my son. It has taken eight months of this for people to finally stop thinking I’m just being a crazy mom. Just this morning we saw the pediatrician and we are headed out the door for bloowork, etc.

149. I have been reading everyone’s post from the last year hoping that someone would have some insight or had had a similar experience like my daughter, Madi, who is now 13. My heart breaks for all parents/children dealing with the stress of Periodic Fever Syndrome.

     My daughter was just diagnosed with PFAPA in the last year. We learned that this was what she had when she was little (started at age 18 mths.) and sick every month, but at that time we knew nothing about PFAPA. When Madi was 5 her little brother had to have tubes in his ears. When we met with the ENT for my son, I also talked to him about Madi. He informed me that they usually do not take someone’s tonsils out unless they have had so many documented cases of strep. I begged and pleaded for him to please just take her tonsils out! Months later Madi had her tonsils removed and never got sick again!!! It was a miracle!! I couldn’t believe it.

     However, when Madi turned 10, so 5 years later, She was visited by the one and only Mother Nature. Yes, she started her period! I was sad that she still was so young but that seems to be the average age these days. Madi was also revisited by these lovely fevers!:( We have been dealing with them again for what will be almost 4 years. She has missed out on so many things throughout her life because of these fevers/ etc.

     We have been to a Rheumatologist and a pediatric gynecologist. My frustration is above any that I have ever experienced. We went to a pediatric gynecologist as our Rheumatologist suggested due to Madi’s “episodes” always happening about the 3rd day of her period. Obviously, it has something to due with her hormones. At this point in the game, which is not easy, being that you are at your insurance company’s mercy. We have had to do things and try medicine that we didn’t particularly agree with, just to get to the next step/Dr.. Hoping that the next “step” would be the answer to our prayers! Madi is currently taking a birth control to see if keeping her hormones on more of an even kill vs. a sudden drop will help with these episodes. It seemed to help it not be so intense last month but then this month it was back to the norm!! The first birth control they tried did keep her from getting sick, however, she gained 20 plds. In 3 months, bled heavy the whole 3 months and started getting migraines. Madi was devastated by the weight gain, considering she is more of a solid build to begin with and the heavy bleeding and migraines were just as bad as being sick. we really did not gain anything from that medicine. I was afraid that I would have a daughter with an eating disorder or she would continue to gain 20 lbs every month and then be borderline diabetic.

     So, now we are on to another BC and as I mentioned before, not much improvement!
     My heart is so heavy for my daughter. There is nothing worse then hearing her cry and say she is so sick of being sick and so tired of not being able to be a normal 13 yr. old and hangout with her friends and etc. She is very active in school with sports and clubs but missing 3-7 days every month will and has had an effect on a lot of those things.
     We have also tried prednisone but again, not much luck! It shortens the length of that episode but it also shortens the time between episodes as well.
     We are currently waiting to hear back from an infectious disease Dr.. They are reviewing Madis case and we will go from there!

     I will not stop fighting for my little girl! My heart and gut tell me that there has to be more to all of this and to just keep fighting! I have even asked Dr.’s if something as simple as changing Madis diet could make a difference. They pretty much just blow me off. I feel myself getting more and more angry every time I have to tell our story to a new nurse/dr. I feel like they just want to keep giving her a pill, instead of looking into the real underlying problem!!
     We have had numerous blood tests done both when Madi is sick and when she is healthy. When she is sick her kidneys do not function properly. She has protein, blood and white blood cells in her urine. Over numerous years of sickness this does damage to your kidneys. Not to mention, the damage being done to her liver/ organs due to ibuprofen and other medicine!

     I know that I have rambled on and on and it is not meant to scare anyone or cry “poor me”. It is to encourage all of you to fight for your kiddos. We are their only advocate. If we do not speak up and ask ?’s then no one else is going to. I realize that dr.’s do not have a cure or answer for everything; but I also know that sometimes it is a matter of finding the right dr. That is going to take the time and effort to help your child. I will continue to pray and leave this in God’s hands. I can only hope that in the end this journey will bring light and help others dealing with PFAPA!

150. Hi, my son had periodic fevers from the time he was 19 months old for about a year. (the rest of this explains why it was only a year) 🙂 They were like clockwork, every 28 days almost down to the hour. His were always in the 105/106 range with very frequent violent febrile seizures associated with them. (twice he landed in the hospital due to aspirating from these seizures and going into respiratory arrest, one of which he nearly died from..) This season in our life was the scariest season we had been through. Thankfully after moving from a small town to a big city with a nationally recognized regional children’s hospital, we got him right in to an amazing family doctor who got right down to business pouring over his medical records and trying to figure out what was wrong. That combined with my late night internet searches for an answer, we finally found out about PFAPA/Marshall’s syndrome and realized that is what he had. (which is an auto-inflammatory disorder where the body doesn’t like a particular organ in its own body, in this case thought to be tonsils/adenoids) She used steroids for diagnosis only, which he responded the way that was expected if indeed he had this syndrome. The problem with using steroid for this condition is it makes the episodes come in sooner intervals, so two weeks later he was having another episode. I started reading about a physician in Boston, who’s own daughter had this mysterious disease, and long story short (he is an ENT) he started to do research studies on this and found that most patients that had their tonsils out stopped having episodes either all together, or much less frequent, or less severe. I called and spoke with his nurse who said that most ENT physicians at that time were not aware of this condition and would therefore be unlikely to take out healthy tonsil tissue (since the tonsils themselves are not diseased, it’s the body developing an abnormal immune response to the tonsils). I guess they have people from all over the nation that fly in to have their children treated by him. I spoke with our family doctor who advised me to wait while she makes a few phone calls. Thankfully she discovered that one of the top ENT doctors at our hospital was familiar with this condition and had even removed a handful of PFAPA kids tonsils with good results. So we got my son in right away for the procedure and timed it so it wouldn’t be during a flare. It was essential in his case that we do what we could because his body was so prone to setting his internal thermastat so high and result in these complex febrile seizures which in his case were dangerous. Also in his case, tylenol and ibuprofen did nothing except maybe bring the temperature down to 102 over the course of 4-5 hours. (another indication that this is auto-immune/inflammatory in nature). So Sept of 2009 he had his tonsils removed. He has not had another episode since. We did have a scare about a year later where he spiked a 104 fever and I thought for sure it meant he was one of the small percentage of kids the tonsillectomy was not curative for. After taking him into the doctor, she noticed the tiny blisters on his hands and feet which got him the diagnosis of hand/foot and mouth disease. We were so relieved the fever was from a virus that time and not another episode. Since then, there has been no evidence of return of symptoms of PFAPA. Another option (if going the ENT/tonsil route is out of the question), is to visit a rheumatologist that is familiar with PFAPA. They have medicinal treatment options (not steroids) that often works at preventing the episodes. But I wanted to get on here and let you all know there are options to look into. HTH.

     1. We are visiting an ENT next week. We have also been directed to consider removing the tonsils. We are still in the preliminary stages, as we’ve only been dealing with it for 6 months. But after learning more about it and seeing how long others have been dealing with it, we wanted to get a jump on treatment.

     2. Thank you so much for explaining this Rebekah. We had our son’s tonsils taken out nearly a year ago with resounding success. Although the ENT had never taken healthy tonsils out for such a condition he had never heard of, he was willing to do it as we were at our last resort. I still didn’t really understand why having the tonsils out worked, but now I know thanks to your post. I copied your post and gave it to our ENT and he said he would look further into it. Australia seems way behind in recognizing this illness. Thanks again for explaining so well. It made such good sense as we have a lot of autoimmune cases in our family.

     3. Rebekah, can you share the name of the Boston ENT doctor who will remove tonsils in relation to this autoimmune problem.

151. Thank you!! Thank you for writing this blog post. I found it by googling recurrent fever. My son has been experiencing a fever every 3 weeks since last year. I even stopped taking him in because I keep getting told its a virus and it does go away after 2 days. I’m going to start tracking it now. So grateful for this post and all the comments.

152. My name is Stephanie my four year old has been having almost all the symptoms as your little one her father’s niece died of lukemia Jayla Rae Cooper and I’m worried it’s that.But I’ve gone to the doctor and they said the same thing I’m going to get her into the pediatrician again

153. Linda,
     Thank you for starting this post. I want to share my story with you. My son started his fevers around 15 months. No other real symptoms, just high fevers reaching to 105, and lasting 5-7 days. I had the same run around with doctors and then a disease specialists and finally told its periodic fever, give motrin or Ty and keep track of fever episodes. So every month, same time we dealt with it. Everything mentioned in these post. The sleepless nights, worries, pain of helplessly watching your lil guy suffer. March of 2013 was what I thought his last fever. 104.5, no appetite, big sick eyes, throat red, and miserable. Rotating meds every three hours I feared for his liver. Then they stopped. Gone. We didn’t even want to talk about it, as to not jinx ourselves. Well, Feb. 14, 2014, he slept all day, I thought maybe he getting sick. (He has been healthy, with not even viruses) Like a devil in the night, his fever came 104.5. I knew it was back. Fever lasted 3.5 days, meds every 3 hours. Refusing to take them, made it all the more difficult. Wouldn’t eat, restless, red throat. I was wishful and took him to dr. no strep, no ear infection. Nothing. Today he looks better, but still not his happy self. It seemed worse than the others. Maybe because he could tell me how bad he feels. He’s angry and miserable! I am a strong mom, but this suddenly coming back has caused me great sadness. I have cried to all these posts. I’m so sorry to hear about these children suffering and parents too. I am lost and frustrated!!! I am trying to pull myself together and if it in fact it returns 3 weeks from now I will be contacting an ENT. Please let me know how it works for all those that is having it done. I know there are risks, but look at what they are going through now. If there is a slight chance of fixing this, I am tired of feeling helpless. Its amazing to hear such similar stories. No one quite can understand what us parents are going through. I will be praying for all of us, I believe in miracles. I do.

154. I’m writing this as I’m helping my 9.5 year old maintain some level of comfort through her monthly episode. This is the first time that I’ve read about other people’s experiences; thanks for sharing. My daughter has had monthly episodes of sore throat, followed by nausea- usually only clear liquid and a little bile. Her episodes last for about 12-24 hours. After that period of sheet misery, she’s back to normal, chatty, hungry, thirsty and full of energy. It comes like clockwork and i pretty much plan our lives around it. This has been happening since she was 4 years old. Her pediatrician has never heard of anything cyclical like this. On occasion, her episodes are followed by a runny nose. On November and December 2013, I gave her some homeopathic supplements in an attempt to boost her immune system- right before her scheduled episodes. On those two months, she did not get sick at all. I neglected January and February accidentally and of course she’s sick again. Hopefully, I’m on to something and it’s not just a placebo.

     1. Hi everyone. I posted almost a year ago when my 2 year old was first diagnosed. We went a year and a half with fevers every 21 days, he had leg pain extreme fatigue and diarrhea for 5 -7 days. In June we were referred to a gastrointestinal on a hunch by the rheumatoid dr. When we went the dr asked us a serious of questions that were mostly about the events that led up to our first extreme fever. After more extensive testing she treated him with a intense round of antibiotics for a parasite. She stated that sometimes kids can get parasites from water and it will cause their immune system to go wacky and can cause the reoccurring fever syndrome. She had previously treated 3 children with great success. After the treatment was over we have been completely fever free. In fact we have now made it through an entire winter in daycare with not 1 visit to the doctor! We still deal with some leg pain which they said will eventually go away but no diarrhea at all. And he sleeps all night in his own bed!! I’m so grateful that the Dr looked outside the box and I felt like I needed to share this, in case other kids out there have the same issue. The parasite test all came back negative but she stated that we may never know what parasite he actually had because there are thousands and they are hard to test for. But she treated it in hopes it would get better and it did! Good luck to all you and your babys and I hope this helps. If you have any questions my email is jdub319@yahoo.com.

155. I am so Thankful that I found your blog. im currently going through the same exact symptoms with my youngest son Elijah, it started when I caught the common cold this winter around November which having a big family (me and 4 others) in the same house evidently everyone caught it. I thought that I got the worst of the cases because my common cold went on for about 4 weeks then finally was diagnosed with upper respitory infection which my youngest had as well just not as severe as mine even after everyone else got well. He was given an antibiotic which did help the infection go away but he still coughs and Ive noticed now he snores as well when he didnt prior to. Ever since then he has been the only one in the household to get a fever but no cold symtoms. He’ll be running around laughing and enjoying himself then out of no where he’ll go lay down and say he doesnt feel good and will get the fever symptoms. It veries in time mostly hell have the fever for a few days then it’ll go away for about a week or two then its back.. well so far I’ve noticed it veries but reading your blog about tracking WHEN and how bad it gets is a great idea but I’ve taken him to the hospital almost every time he has a fever and they havent ran any tests or anything just give him some ibprof and send him on his way. So I finally got an appointment with his pediatrician for tomorrow and im so nerves I havent been able to sleep the last few nights (on top of my baby crying in the middle of the night and trying to get him into the tub at 3 and 4 am to cool him down but have been so nervous for the appointment. Of course as a mother im thinking the absolute worst and reading your blog helped put my mind at ease if only for a little while but atleast I can try and keep a positive outlook on it knowing Im not the only mother going through this!

156. Hi again, I wrote a while back aout my daughter Zoe who has been dealing with this for almost 6 years now. Just wanted to add a couple things…
     We have been having some good luck with alternative stuff like no gluten, or sugar and more recently homeopathic. Her fever skipped last month and since starting the homeopathic, the vomiting she usually has with the fevers has completely stopped. Her symptoms seem to be milder in general, though its early so we are cautiously optimistic.
     Just wanted to share in case it might help other families. Also, our public school has created a long standing independent study for her so that whenever she misses, she can work from home and still stay on track with school.
     Good luck to others, this is such a challenging thing to deal with.

     1. Just wanted to add an update. In addition to homeopathy, we have been trying an autoimmune diet for PFAPA and have had fantastic results. It has been 8 weeks since Zoe’s last fever. The longest time since she was 1 year old (she’s almost 7). It sounds extreme (no dairy, eggs, nightshades, only white rice for grain, no sugar) but it’s easier than we thought it would be, and not only have the fevers disappeared, but for the first time ever, her lymph nodes are normal size. She also told me “I’m not the fastest at school mommy, but now I’m not the slowest.” She said she doesn’t feel tired all the time anymore, and definitely seems to have more energy. For us, this seemed like a better solution than surgery, though I think each family needs to decide for themselves. Because this is an auto-inflammatory condition, it makes a lot of sense that the Autoimmune Protocol works.
        Best wishes to all of you that are dealing with this. I’m happy to answer any questions about our diet if you have them.

        1. Jennifer,
           I would love more info on your diet and homeopathy. My daughter has had these recurring fevers since 1.5 yrs. she is 8 now and fevers continue. Her highest so far which landed us in ICU was 105.8
           She did go fever free from the age of 4-6. Then they started again after the infectious disease specialist said once they go away, they usually dont come back. We dont do the steroids and refuse tonsil and adenoid surgery. I have been bringing her for chiropractor work, seeing a homeopathic dr and we just cant seem to figure out the right remedy for her. Saw a homeopathic dr is europe when we were there. He thought she was having kidney issues and her kidney wasnt doing its job and the “toxins” or food in her body was not being broken down properly so it wasnt being digested properly, etc
           My daughter does get awful breathe and white sores in her mouth and a bit achey in her legs but no other symptoms.
           I have removed gluten from my youngest’s diet as well as mine for health reasons so perhaps its time to remove from my feverish child as well.

157. My 3 year old daughter has just been diagnosed with this as well. I had never even heard of this until we started having issues last year. I’m happy to read that you decided against the steroids, as have we. I do truly wish there was a treatment other than treat the fevers and wait it out. I have read on some cases, removal of the tonsils and/or adenoids has proven helpful in some cases. We aren’t entertaining that option yet. I just hate to see her suffer. Hope he grows out of it soon!

158. Another episode…… Our son is 4. At 9 mos he had a high fever, tested +for strep and then since had regular, near monthly fevers. Not even a sniffle before that. We tracked, charted, and monitored his high fevers and our dr listened and dx’d PFS. Did a trial of prednisone- one very small dose at onset of an episode and it stopped it. If we use the prednisone, he is back to himself within 24 hrs. If not, we have 3-5 days of treating a miserable little guy and worrying about his fevers spiking. I also worried abt steroids yet it is such a small dose once a month at the most and cuts down on his misery. Our new problem is that he is getting older and really hates the taste- harder to get him to take it. We had a 6 mo break in fevers and I thought he was outgrowing it. Started again 3 months ago and back to monthly episodes. I also see changes around the eyes preceding episodes, puffiness. And lymph nodes in neck are pronounced- this has always worried me because they never go down all the way in between episodes. What a strange syndrome this is- glad to know there are other folks who understand!

159. This sounds exactly like what we are currently going through with my 15 month old daughter!

160. We are right there with you. Our seven year old son was diagnosed over a year ago. I agree with you Linda you must document everything. We’ve had autoimmune testing, allergy testing, etc. He missed over 20 days of school in Pre K and Kindergarten, less than 20 in 1st grade, and I just picked him up today (now in 2nd grade) with another episode. It’s crazy how we now recognize the symptoms before the fever starts. Thank you for this blog..it helps to read of others going through this with their children.

161. Thank you so much for this article!!! I am presently sitting up with my two year old with another high fever. His last one was almost a month ago, and the previous five or six fevers were all about 3-4 weeks apart. No outgrew symptoms any of those times. He has had a catheter twice, CBC done last time. He was given antibiotics last time as they thought it was a bacterial infection. The performed blood and urine cultures that showed nothing. I feel so much better that I am not the only mom going through this.

162. Have you considered any autoimmune issues triggering the fever? With the bowel involvement, I would think some sort of gluten intolerance that is triggering an autoimmune reaction of some kind. Not all gluten issues are Celiac disease or allergy. Consider trying an elimination and gluten challenge. There’s no harm in trying and you might be surprised to discover that your doctors and their tests do not actually catch or know all. If not gluten, it could also be some other dietary intolerance – corn, egg, dairy, etc are all not out of the question.

163. Hi Linda, I found your post one very frustrate night, shortly after you wrote it, when I searched “re-current fevers in children.” Two months after my son turned 1 (he is now 2 yrs 8mos) he had roseola, then had a high fever about 3 weeks later. The pedi thought it could have been another strain of roseola, no one was concerned. Then every 3-4 for weeks he would come down with another fever, sometimes 105, I would call the service, the pedi on call would tell us give him motrin, apply cool compresses to his feet, and bring him in for a visit in the morning. This went on for 6 months, each fever seemed to coincide with a holiday gathering, birthday party, trip to a public place, and each time the pedi would say its a virus picked up from another kid/playing with dirt/someone at the party was probably sick etc.
     Like your son, he is otherwise very healthy, strong, and growing like a weed. He has always been tall for his age, and most people think he’s 4. Because he is developing so well, my pedi did not consider PFS when I first suggested it late last winter. Then last March, as Matty danced around with a 103 fever, I called her in tears because I knew something was wrong, there is a pattern, he hasn’t been around him that was ill. She heard the urgency in my voice and scheduled a battery of tests, both when he was having an episode and when he was well. She consulted with a rheumatologist and infectious disease doctor and have diagnosed him with a mild form of periodic fever syndrome. The next step was genetic testing to see exactly which form it is. But we chose not too, it won’t change how we treat him and we can’t stand to see him get any more blood drawn unless absolutely necessary. Matty shows EVERY symptom that your little guys shows, and now that he’s verbal and older, and is more aware he’s not feeling well, its even harder to watch. His mood changes from an otherwise happy, funny, playful little monkey, to a screaming, screeching, two-hour tantrum having stranger child. It takes a full 7 days for him to recover, regardless if the fever runs for 5 days or only 3. Thankfully both ibuprofen and acetametiphen work. And for the last few months our cycles have been going 6 to 7 weeks instead of 3 to 4. And I know this sounds crazy, but I can usually tell when its coming because his breathe changes and develops a sweet smell to it, even before he gets the “sick” eyes. When I did research all I came up with was juvenile diabetes, but he was tested for that, which was ruled out too along with everything you listed in your post (thank God). So know my kid must think his mother is crazy because I’m always sticking my nose in his mouth! The expectation is that he will grow out of it, and with each passing week we pray that it doesn’t happen, but when it does I get sad, my husband gets angry, we cool down and then we just roll with it. Sometimes I feel terribly guilty that I, or we gave this to him, how could we do this to him? But then I have to talk myself down and say “it is what it is, and he has it, and it doesn’t really matter where it came from.” Thank you for sharing your experience. I wish I were alone in this, that no other kids were suffering from this, but I do feel comforted that I’m not.

     1. Wow! The similarities are amazing. Thank you for sharing your story.

        1. We have been going through the same thing with our daughter for the past 5 years…our pediatrician whom we trust and feel confident with has kept telling us she will grow out of this and not to worry….she has been tested for lukemia, lupus, RA, and all came back negative. Last week, after another episode, we were asked to repeat the blood tests again….previously she had results showing a high sed rate and low lymphs, today her results again showed high sed rate (51) and low lymph (23). Our pediatrician’s office says these results reflect inflammation. We have been referred to an infectious disease doctor for further testing…my daughter shares the same symptoms as your son, down to the changes in the eyes….we call them her “sick eyes” and know a fever is on its way. If you don’t mind us asking, we’re your son’s sed rates elevated as well…thank you so much for sharing your story. It is comforting to know we are not alone.

        2. I’m not sure why this blog popped into my head today, but I felt it necessary to share that my son Matthew, who is now 6, had not had an episode for 2 years!!! Of course he’s had other things like ear infections, severe sinus infections, stomach bugs, and other childhood related ickies, but each fever has been a symptom of something easily diagnosable! I knock on wood as I type this, especially after reading what I wrote 3.5 years ago and how sad and frustrated and scared we were. It is believed that he has grown out of his PFS. So please hang in there everyone. Follow your gut feelings, take care of yourselves and your children. And thank you again Linda for writing about this and publicizing your son’s story so that the rest of would know that our kids aren’t alone, and that we could experience some support when it was so hard to find.

        3. I am so happy to hear this, Lisa. Sadly, at 8 years old, my Nolan is still suffering from fever episodes. He is however a very healthy boy otherwise. He plays travel soccer and lacrosse and is a beast on the field. You’d never know he has an autoimmune disorder. I have recently started Vitamin D, Tart Cherry Pills and upping his vitamin intake via supplemental beverages. Here’s to hoping and keep sharing your successes. I’m so happy for you all! xoxo

     2. My son also gets a change in the smell of his breath. Is this typical?

        1. I haven’t found any research that says the 2 are related, our pedi hasn’t given any insight iether. Foul smell usually indicates some sort of throat infection, but that has never been the case. His is a sweet candy/acetone smell that has nothing to do with blood sugar levels. I’m not a doctor, but the only thing I can think of is that there whole body chemistry must change when they are having an episode.

164. I think we are going through this with my son who is 5yrs old. Since he started kindergarten in September, he has missed 21 days due to fevers. When he started getting fevers about 1.5 yrs ago, I chalked it up to the new germ filled environment of pre-school, then the new environment of kindergarten. However, he had an episode 3wks ago and here we are battling a fever again, which finally got me thinking…something isnt right. Thinking back on the last year or so, its all coming together. I stopped running him to the doctor because when this began, I’d been told time and time again that it was just a virus that needed to run its course. At one point I told the doctor that i felt like he was sick ALL the time and the doctor rattled off some statistics about the number of viral infections an average child gets per year.
     This blog post made it all click for me, when I read your son’s symptoms, I was like…THIS is it. The part about the shape and look in his eyes really hit it home. I’ve done a lot of Googling in the last 24hrs! He has a well visit scheduled later this month. I’ve marked all his school absences on my calendar. I hope that is enough to show his Ped and finally get some answers. Thank you for your post.

165. My son started these monthly fevers at about 2 1/2 years old and they went on for 18 months! Every month for 5 full days, 104 degree fevers (usually) with no other symptoms (no sore throats either). He had his last fever 3 months ago at age 4 years 1 month. We had been through three rounds of blood work with nothing really abnormal, then extensive ultrasounds and X-rays to rule out anything else scary. Nothing. Then they stopped without warning. We had just received the approval to see an infectious disease specialist and would have gone that following month, but the fevers stopped. So we are waiting, but so far so good. Seems like what some have experienced; that it stops as suddenly as it starts. I cannot express the relief we feel and can’t believe we went through it so long.
     Please hang in there all of you who are still in it! I hope it stops for your sweet ones soon too. Mystery never solved!

166. Our daughter has this too, we have been dealing with it for three years. She is scheduled to get her tonsils out this month. Her fevers started around age two, she has had a fever every 3 to 4 weeks 104-105 for seven to nine days at a stretch. Last year we started using to steroids, one dose at the beginning of the fever and it knocks it out. I am not sure if your son gets the white ulcers on his throat but our daughter does. She has never tested positive for strep but it always seems like it is. We are hoping removing her tonsils will bring her and us some relief. We too did tons and tons of testing while spending a lot of money to always come up with nothing except for lots of scary it could be…

     1. My son had a tonsillectomy December 2.
        Since then we have had two fever free months. Tough recovery but so worth it because it helped him so much. Good luck!

167. Are the fevers always really high? My 6 yr old DS gets them and they’re just high enough to not be able to go to school, his stomach hurts and it usually only lasts for a day sometimes two. Today is the fourth time (that i can remember)since the middle of November. I was thinking about this and realized all of a sudden that this seems to be happening a lot and I just looked over my attendance at work and the reasons for taking vacation – then I stumbled accross this…..

     1. Yes, the fevers are always that high for my son. I can only speak to my own and our experiences.

168. Thank you for this blog. My three year old daughter started presenting with PFS this summer in August. We noticed there was a pattern in November and as you were told everytime we took her to the Peds its a virus and it will run its course. In November we insisted on having blood work done and it was all normal. We were refered to an infectious disease doctor and go next week for that. Did you ever experince an episode happening twice in a month? We are now going through her second episode with only a two week period in between.

     1. Unfortunately, our episodes are getting closer together. We have had two episodes in one month.

        1. about a week ago my grandson had an infection in his eyelids with a fever-101-103. My children took him to the emergency room and were given antibiotics. The emergency room Dr.(not a pediatrician) suggested a CAT Scan because he was concerned about the fever: however the hospital did not have a CAT for children. Their local pediatrician gave him stronger antibiotics for another day or so.The Dr. felt the CAT scan was not needed. The eye lid infection(swollen eyelids) went away, but the fever remained. The Dr. then took him off the antibiotics because the Dr. thought it was a virus. It’s been about 7 days, and when the motrin wears off, the fever goes up. He had been having nightmares, as well. Today they took a series of blood tests and the first results were negative. They are waiting on other results now. This is the first time this has happened, and I was wondering if this sounds familiar.

169. Hi, this is Denise Archer. Someone sent me an email today asking if we were still fever free after tonsil removal last April. Yes we sure are fever free, our 8 year old son has been a ball of health ever since. He is thriving. The doctor that took out his tonsils wrote me a lovely letter in November saying how pleased he was that it had worked, that he had learnt something from it and would continue to look out for this condition in the future. Can you believe this? Our 4 year old son has been doing exactly the same thing – fevers every 3 weeks now for 4 months. Just getting bit of a case up before I present him to the specialist saying – ‘here we are again with another kid!” Must be some genetic thing in this. At least we won’t spend another 4 years looking for answers and diagnoses as we know exactly what to do – get his tonsils out as we have proved with our other son that it cures this strange illness. Interesting how both boys were 4 years old when this all started. Still no answers as to why taking the tonsils out works, as my 8 year olds were totally healthy when tested.
     All the best,
     Denise.

170. Sitting here with my daughter who has a fever and has been getting them frequently, not sure what is going on, there doesnt seem to be a pattern, but I am going to start charting. My girlfriends daughter had periodic fever syndrome for a couple years. After a lot of research she insisted in having her daughters tonsils removed. It has been about 2 years and her daughter hasn’t had an episode since.

171. I just came across this as for the past year, I thought I was going crazy! My (at the time, 5) and now almost 7 gets the same way. Last night, he was uncontrolably MISERABLE. Screaming, tired, fighting. I said to my husband, he doesn’t look right and a 6pm, we caved and told him to go to sleep. But, I took his temp. Almost 103! The night before, 102! WOW! Gave him ibuprofen and with in 15 mns (or os, when I rechecked) the temp was back to normal. I will now begin to track the episodes and note them to the dr. He is home today with a slight (also persistent) cough. Thank you!!!

172. My son had this PFS for several years (every month for a week!) . At Hershey Medical Center he tested negative for Mediterranean Period Fever (must be negative) => which meant that tonsillectomy was promising. Tonsillectomy has resulted in symptom free remission for 5 years!

     1. Beth, what a relief to hear!! We are also working with Hershey Med (small world, huh?). My 14 month old daughter was just diagnosed with PFAPA but they haven’t totally ruled the others out yet. I am hopefully that we can eventually have a tonsillectomy and be fever free. I am so happy for you and your son!

173. Wow!!! Thank you for sharing! My 5 yr old son constantly has recurrent fevers for the past 2 years with no known causes. His face and ears go extremely pale and his temp drop before his fever spikes and he complains of extreme leg pain. It is like clock work…every 3-4 weeks. Fevers usually last a day or two then they magically disappear (unless of course he does have an obvious infection). His fevers have been as high as 105 without seizures and the medicine always brings them down but never to a normal range if they are that high. He has missed so much school and hockey because I am afraid he is contagious. Since he appears perfectly fine after the meds, I was wondering what your doctor has said about your son attending school or sports events during an episode?

174. Thank you for this helpful source of information, it is uncanny how similar our stories are… I saw the picture of your son and that is exactly how my son looks right now! We have been dealing with and trying to figure this for 4 years now, but only have episode about every 2-3 months. We too just received news that the Dr. believes it to be PFS.

175. I want to thank you personally for this. My daughter just turned two and has been spiking random fevers. Yesterday was her last episode and her fever was 104 all day. I’ve been searching for some answers and because of your post I might have found it. Thank you

176. One of my grandsons has a lot of the same symptoms. He is 4 and has fevers off and on with no real cause. Repeatedly we are told ‘virus’. It doesn’t help that He is such a picky eater. I think we will start tracking foods, and especially His fevers. Thanks for all you information and sharing!

177. This is my exact story!
     My son just turned 13& we have been ” noticeably dealing with this for 5 years!
     He was diagnosed with the pfapa fever syndrome.. We too were tested for all of the above, he just recently ( this week) had a 4 days 104 episode, i long for another answer since it is a process of elimination diagnosis. He has missed so much school since grade 2/3 that in 7 th grade he is so far behind…. You should look into a 504 plan through the child study team for periodic fever, it is somewhat helpful. I pray for you and your son& feel your pain!

178. I am a little relieved after reading this. My 2 year old was diagnosed with PFS last March, although her fevers started when she was about 5 months old. She went through many ER visits with the same end result. “It’s a virus” We finally got referred to a specialist at Children’s in DC. Long story (just like yours) short, she was diagnosed after some testing. We did get prescribed the Prednisolone and as much as I hate it, I do use it. She had her reoccurring fever monthly up until this past July. Then nothing. I was hoping she just grew out of it. Then in November, the fevers returned. She actually had two within a week just this week. Any thoughts to that? She’s never had fevers so close together. We moved to Florida in July and her new doc mentioned getting a scan of the brain. Has anyone else had this mentioned to them? I also keep reading about the tonsils being removed. Thanks 🙂

     1. My son had his tonsils and adenoids removed 2 months ago and has not had a fever since. I have to tell you the recovery was really rough but the Dr said his tonsils were infected when removed and if this solves the problem will be totally worth it.

        1. I am so sorry I have not replied to so many of your comments. The holidays were very busy for us and we have two episodes in the month of December alone! I do read all of your comments and empathize with all of you. Best to you all!

179. This post is near and dear to my heart. My 2.5 year old son has been experiencing recurring high fevers (103-105) for three days every 4 weeks going on 10 months now. The pediatrician continues to tell us it’s just a virus despite my documentation. Good to know we aren’t alone. I will continue to fight for my little man. Thanks so much

180. Wow thank you so much for this blog. My son is 2 years old and just started preschool in October. Ever since starting, he’s had a fever one a month, consistently around the same time of the month/every 4 weeks. It’s now the third month straight and now he has his first doctor’s visit. I feel better knowing that it’s very well possible that my son could have a condition that is not life threatening. Again thanks for creating the blog and for everyone sharing their story. I’ll post updates.

181. I am just now going thru this with my son we are waiting to get the results from the bloodwork. He’s 2 and has had a high fever with no other symptoms for the past year on the dot every 4 weeks. nervous over here

182. I live in Canada. My son has periodic fever syndrome as well. All thr things you describe are what we have gone through since he was just under 2 yrs. The first episode was unfortunately as my dad was watching him while my mothrr and I went for an overnight away. When I got home we rushed him to the hospital, they thought he was at the start of getting rosealla (common error for peroidic fever disorder). It never came. 3days later we were discharged. Same as you it started occuring all the time. We as you only took him to the hospital when he would get lathargic and stop taking fluids. They always tell us its a virus (once even saying he had salmonella but yet everyone ate the same food..supposedly another common error) and send us home once he was rehyrated. We also knew it was coming on same ss you but also my son temper would change, our nice easy hoing happy child would be mean angry and downright belligerent and he has always been very underweight and small. After having to bting him to the hospital two monyhs in a row, the emergency child specialist there looked into my sons medical history and took him as a patient. From there we were accepted to sick kids hospital in Toronto ontario. It took almost 4 yrs many hospital and dr visits to get it figured out. My husband and I were both tested and I am thr lucky petdon to have passed this to my son and I have 3 other children whom are older than him. The dr eants to test them as they may be carriers and just never had the side effects. Also my parents to be tested as to find out where it comes from and so on. They did put my son on colchicine for a while but it upset his stomach that he was sick with throwing up all the time. I am happy to say that he will be 9yrs old I jan 2014 and he has not had a fever in almost 1 yr. Mild fevers yes like kids without periodic fevers but no episodes. He is gaining weight and height and is always happy go lucky again. We have also moved onto yearly check ups at sick kids. The specialist has told us he may grow out of it but I never believed it until now. He also warned us that they could sometimes come back but the reprieve right now it a nice relaxation. Thank you so much for your story. Anytime you want to chat you can email me.

183. I am going through something very similar. My daughter has a high fever every 2-4 weeks. Some spike as high as 105.8. Every time that happens we rush her to the ER and they tell us it is some virus or something after running the regular battery of tests and coming up empty handed. I am getting to the end of my rope. I feel like no one will listen to me and they keep brushing me off.

     This morning she was fine, just wouldn’t eat. Then she started to get lethargic and her eyes started to look feverish (again…) we were at the grocery store and I forgot my thermometer that I usually bring with me. I pulled one off the shelf. She was 104.1. I left the store and went straight to the pediatricians office. By the time we got there she was 105.3. They were on lunch…. (ARG!!) so I took her to the ER. They ran the flu test, urine and chest X-ray. All came back clean. They ended up sending us home (again….) saying it is a virus. They say that every time! I don’t know what to do since they make me feel like I am crazy!

     1. Erin…I totally hear you. The virus diagnosis is getting a little old. I have worked for physicians on the administrative side since 1999 and, they all agree that the virus dx is just another way to diagnosis an unexplained illness. My son’s pediatrician recently told me when his fever spikes again to bring him in no matter the time of day or night and he will run tests. He said he must have a fever first and he will run blood cell tests, he thinks this may be a white blood cell count issue that is normal when the fever is not present but goes very low when he has a fever. I do not know the actual diagnosis but I will update everyone when this happens! Good Luck!

        1. We did the blood tests with my son… for 6 weeks we had his blood drawn 2 times a week. Then when he had a fever we brought him into emergency and tokd them blood needed to be taken right away for testing for his specialist. We also had a letter with a phone number for yhen to call specialist for more info. The hospital was great they watched him and waited to get bloodwork done at optimal worse temp. He could not have any medication in his system for this. Because of those blood tests we were able to finally get a diagnosis. Then the specialist tested me and my husband and it was my genes that passed it to my son. We are now in the process of getting our 3 older children tested to see if they are carriers.

184. This is incredible to read. My son (4) has been going through the same symptoms as you have described, but quite literally every 14 days. This has been going on for 10 months and every time I mention it to his doctor, he seems quite incredulous and that I am perhaps exaggerating. I have seen now three different pediatricians and my next step is to go to the Cleveland Clinic (I’ve been advised — finally (!) to have him seen by the “big” guys). I, like you, have begun to diary his episodes and it is like clockwork. I can tell a day ahead of time when it’s going to happen (it’s always a 3 am call beckoning me to his bedside.) We will see what they say. Nervous, but ready to have an actual diagnosis (and to take this matter seriously!!!) Thank you for sharing your story – it’s nice to know we are not alone.

185. Currently experiencing that with my daughter who will turn three at the end of the month. All the symptoms your son has, my daughter has every 3-4 weeks. The first couple of times she developed a fever i took her to see the pediatrician but i got the same answer… Its a virus, it will wear down on its own. ultimately, we stop taking her since they would not do anything. We are going on a year already since this started.

186. Hi Lauren,
     I came across your blog post as I was looking for more information for my daughter myself today. My (now 10 year old) had Periodic Fever Disease that started when she was a little over one. This was way back in 2004 and NO ONE had any idea what PFAPA was back then. I had one ER doc tell me it was just because I was a working mom and had her in daycare. We lived in a smaller city than we do now, and we were shuffled from one ER to the next and every type of specialist the city had. No one had answers. It took us moving to Pittsburgh in 2006 to get any answers. I’m gad there is more information now about the disease so children can be diagnosed much more quickly. Thank you for sharing your story with the world. It’s the only way for other mom’s to really find out about the disease. It’s a very scary road. My girl had the episodes until she outgrew them sometime around 6. Although we no longer have the fevers, she still has hypermobility in her joints and we now are having rheumatoid flare ups as she draws closer to puberty.
     Has your doctor talked to you about the possibility of having his tonsils and adenoids out yet? We had her adenoids taken out when she was 2 1/2 but because of occurring strep. Had they just taken her tonsils it had a 50% of stopping the disease right then.
     Stay strong, I know exactly how scary this is. You’re doing a great job educating others though!

     1. Thank you Ginger! xo. We are looking into a tonsillectomy but I have reservations.

     2. Hi thank you for sharing your story and I just would like to ask if there is anyway to make the period of 4 weeks longer? Like any medication , my cousin ‘s daughter was diagnosed with the same thing when she was 1 years old. Her father has the same thing too, now he is over 30 and still have it ( mediterranean fever). She gets high fever, joints pain and stomach ache. All she takes now is pain relief med and fever reducer. Any advice about how to deal with this would help a lot. Thanks

187. One of my friends linked this article to me. I just left the hospital after a 3 day stay due to high fevers. She just turned 1 in November, and she has been having fevers for the past 3 months. After running her through every test imaginable (labs for three days straight, chest xrays, echocardiogram, ultrasounds) and going through several scary possibilities like leukemia, juvenile rheumatoid arthritis, and Kawasaki disease, they are sending us to a rheumatoidoligist with the thought that my little one has PFAPA. Thank you so much for sharing your story. It’s helps to feel not so alone during this sad and scary time. I hope your son is doing well. Are there any online groups for us moms??

     1. Hi Lauren:

        Sorry to hear about your daughter. We have been through many of those tests as well and they are so scary. I hope things go well for you. My son is still suffering but we get stronger everyday. Hugs to you! Also, I have not researched any on-line groups but I bet there are some.

188. Our son’s story was almost exactly the same. I remember how family life stopped during these episodes and how sad he seemed. He is now a healthy 13 year old that magically out grew PFAPA by age 5! Keep patient and hopeful!

189. Thank you soooo much, this is Exactly the same thing my son experiences. The last week of EVERY single month. So, EVERY thanksgiving, every Christmas, …. we drink and eat after him and we NEVER get it. He never has any other symptoms. No runny nose, no cough… so exhausting.

190. Hi mums , my son is 2 1/2 years old and has stared to get fevers in the last 6 weeks his are every week, for a few days 3-5 days then he goes a few days without a fever then he has one again. The fevers range from 38’c to 40’c ( Celsius ) when the fever starts it’s out of the blue, no warnings then it comes and goes. For instance he will have a temp then 3 hours or so it will go then return again. He had bloods taken today and we get the results tomorrow.

191. According to what I have read, there is no specific treatment to cure PF. The aim of treatment is to control symptoms during the episodes of fever, to shorten the duration of episodes, and in some children to prevent attacks from occurring. In most children, the disease will resolve by itself without treatment, usually after the age of 10 years. The fever does not usually respond well to nonsteroidal anti-inflammatory drugs. A single dose of steroids (usually prednisone), given when symptoms first appear, has been shown to shorten an episode and sometimes even end the episode. However, the interval between episodes may also be shortened with this treatment, and the next episode may occur earlier than expected. In some patients using cimetidine (a medicine that is used to treat stomach ulcers) may prevents attacks from occurring. In patients with very frequent attacks, a tonsillectomy (removing the tonsils by surgery) may be considered.

192. Relieved to see there are other mommy’s out there dealing with this. My daughter started 2 years ago Dec 24th. Take her in heard virus after virus after virus. About gave up my job in daycare thinking she was getting sick from my daycare kids. But finally after much research we are now finally in the process of getting the diagnose of p fapa. All I can say parents document all the fevers, date how long, symptoms, your treatment of fevers its so important! Im thankful I came across this. So many scares getting to the right name of this. Patience and love two words to get you through each fever run.

     1. Patience and love – couldn’t think of two better words!

193. Please check your email, I’ve written you!

     1. Hi Kristi: I got your email. I promise I will get back to you – just a little nutty right now.

194. HI! Came across your site while searching periodic fever syndrome.
     my little boy started back in April, then July and now the whole month of October until now. Every 10 days and this time just 4 days. Luckily, these last two episodes did not include vomiting. Anyway, our pediatrician says the removing the tonsils will help. He doesn’t know why, he can’t explain it he says but apparently this will help.
     We’re not there yet but next step to consider. We’re buying Costco size tylenol/ibuprofen!!!

     1. My 4 year old son has been suffering from this for over a year now. As a matter of fact it is 2 am and I am laying here waiting for his fever to break after giving him Motrin, so I can go to sleep. Pediatrician tested for Lyme disease cancer and mono. Told me to keep charting the fevers. I took him to a pediatric ENT and have him scheduled to get his tonsils and adenoids out. The ENT said in 15 years he has never had it not cure frequent fevers. We are hopeful.

        1. xoxo to you. Hang in there!

195. This post caught my eye as I was commenting on your Thanksgiving post – I’m so sorry you and your son are going through this – I never knew about this syndrome. I can relate on some level – while my daughter doesn’t get fevers as consistently, she does have febrile seizures (7 into total over the past 5 years) and they are the most horrific things to witness. I get anxious every time she gets warm and I’m sure you can relate. Thank you so much for sharing this important information and fingers crossed that our kiddos outgrow these conditions.

196. My son actually just got discharged from the hospital with Pneumonia. I explained to the “new” pediatrician what was a happening for months prior..he is now taking proactive approaches and wants him at his office the first day of his next fever so he can run tests!

197. Hi, I am 70 years old, half Greek and half Irish. As a child i had recurrent fevers that would go from normal to 104 in a couple of hours. They never lasted more than 2 days. The bones in my lower legs would ache terribly and I would be delirious. I would lie on my back clutching the mattress and feel like I was falling. When I was 17 and living on my own, I went to the doctor for a case of poison ivy and asked him about the fevers. He looked at me curiously, because I am blond and fair, and asked if I had any Mediterranean ancestry. I told him I was half Greek and he said I had an inherited condition called Mediterranean fever. He said I would probably outgrow it. I did. My last fever occurred when I was 20 years old.

     1. How amazing! Thank you for sharing your story. I can’t imagine my poor baby dealing with this for another 16 years.

        1. My son had PFAPA for 1 1/2 years and it was excruciating. We did all the genetic testing as well. We spent many weekends visiting the ER. It was horrible. My brother is a Dr. and he did some research on these fevers and told us that he thought it was PFAPA and to get his tonsils removed. We were nervous as he was only 3 and it was surgery…but the fevers were so bad that we felt we needed to try something. My son’s tonsils looked normal prior to the surgery but once they removed them they found them somewhat mushy (indicative of an infection). The tonsillectomy recovery was truly easier than any fever episode my son ever had. That was 2 1/2 years ago and he has not had a fever since…There is an ENT out of Boston that is quite well known about PFAPA. He has performed a number of T and A’s on PFAPA patients (his child had PFAPA as well). You can google him for more information. We had our ENT do it here in Seattle. Just thought I would pass along our experience. I am so sorry your are going through this, it is brutal.

     2. Half way through these comments, it is Dorothy’ s story that gives me hope. My 15 YEAR old son is newly diagnosed with Pfapa and my only question today is will he outgrow it. As I look back, he has always had this, but like so many others, it was blamed on viruses. I remember his infant episodes of 103-105 degree fevers, when nothing would lower it; his kindergarten year when his feet hurt so bad that he wouldn’t go outside for recess; the many years of the same lower leg pain that Dorothy speaks of (middle of the shine); and the other quirky things happening periodically. There were times all was good but puberty hit at the end of 5th grade and things got bad. He started falling -falling in the shower, falling at school and falling down the stairs. He had an episode that lasted for 2 weeks which included vertigo, a constant headache, fever, sore throat, and what I believe were seizures. I took him to the emergency room and they witnessed it in triage. They immediately rushed him for a scan, but nothing showed up. Blood tests were normal. They admitted him to the hospital so he could have an MRI and it too was negative. Then it became a psychological thing -he was deemed psychosomatic. (Thank God that type of episode was a one time deal!) Later his vision started blurring and causing problems at school, but it wasn’t all the time, just for a few days every month. After awhile the pattern became more consistent. Initial depression, low fever, sore throat, headache, stomach ache, and extreme fatigue became a component of each episode (no ulcers). But sometimes he has a random symptom, like a rash, a severe chest pain or a panic attack. The episodes come every month now, even in the summer, and I now I can predict it. He talks about an uncomfortable feeling he gets just before the episode. I only see that he is agitated and not coping with things. He is a boy after all and wants to deny it. Prednisone seems like a magic bullet, but rebound headaches and episodes are a problem. I feel bad for him because it’s hard to get any traction in life when you are always sick. Some teachers are understanding but some are not. I want to believe all this is related to growth hormones because every year that he has had issues he has grown 3+ inches, but only time will tell. He is now 6′ and just turned 15. I also wonder about a correlation with his father’s gout. Thank you and God bless to all of you for sharing. It helps!

198. My son, 5 years old now, has been dealing with this since I can remember. The older he gets the less it happens yet he still gets them. He is actually going through this right as I type this. It’s miserable seeing our little love bugs like this 🙁 but you are not alone.

     1. This post has been so comforting for me and all the other parents out there. Thanks for sharing your story.

199. My son has been having reoccuring fevers every month like clock work. Actually my 16 year old son noticed that it is every month consistently. I have taken him to the Dr and was sent home with “viral infection” diagnosis. It happened again last night a fever of over 103 while he was sleeping next to me and my husband, he also has a slight cough and belly pain every month that mysteriously goes away after 1-3 days. After reading your blog Linda I printed out the experiences and I set a DR appt and I am having his Dr test him for everything to rule out any other dieases. My husband did mention to me that his brother was diagnosed with rheumatoid arthritis when he was little(so this may be a cause) I am hoping not anything serious. I felt as if it was an immune deficiency issue (thinking he had a low immune issue). Well thank you for posting Linda and best of luck with all the children suffering with this!xoxox

200. My son was diagnosed with PFS/RFS when he was 15 months old in 2005. Please, please read this article from the Washington Post. We ended up getting his tonsils out when he was 4 and he never had another episode. http://articles.washingtonpost.com/2008-06-24/news/36888622_1_claire-fever-first-episode

     I know exactly what you are going through. As I sit here, its looking like my 9 month old daughter might have it too. Please, consider getting his tonsils out. Have his doctor contact Tufts. Do everything you can to advocate for him. It can be cured!

201. Hello:
     I feel your pain. I understand what you go through with this Phapa. One of my two boys is 6 years old and has Phapa too. We got the diagnosis from the doctor when he was almost 3 years old. We prefer to deal with the fever every month and not give him steroids either. Today he started with an episode and we know what to expect…motrin, tylenol, lots of fluids…and not sleep…when he has the fever, he sleeps next to me..and I barely can sleep taking care of his fever.Fever raises so quick that I am afraid. His fever stoped for a 6 months period and episodes are not too bad like they were when he was a little boy, we think it is thanks to the Carlson Cod Fish oil his holistic doctor reccomend. This fish oil helps with inflamations in the body …and according with the doctor who gave us the diagnosis, kids with Phapa suffer of inflamations in any part of the body. Give it a try.
     My son “Constantine” is growing normal and besides the fevers he is a healthy boy.
     The problem we are facing at this point of his life is school. He is missing to many days…we do not want this fevers to affect him with the school and started talking with mmy hubby about taking his tonsils out.
     Just pray for my son and all the Phapa kids every day. As a mom is not easy to deal with this every month.
     God Bless
     Laura

     1. Praying for you Laura. xo

202. Hello,
     My son Dylan is now 11 years old and reading your post is very familiar to me. He has had these fevers episodes since infancy. He was diagnosed about 2 years ago with recurring fever syndrome. The doctors say its some kind of auto-immune disorder. He doesn’t have fevers monthly he has them periodically but when he does it can last up to 3 weeks. My husband and I didn’t want to give him any steriods either. It took us a long time to finally get some diagnoses. He is a happy, funny and normal boy otherwise. Do the doctors do blood work often on your son?

203. Linda, this was so refreshing to read! It’s sad to read, but also helpful to know that we are not alone. Our 2 yr old was just diagnosed with periodic fever syndrome, been going on for 10 months now. When he gets a fever, he doesn’t want to be touched, his whole body hurts, especially his joints, hands and feet. Lab work has shown that his white blood count is low and his ldh is high. Didn’t know if anyone else had these results on their lab work. I have noticed that he tends to get diarrhea in the week leading up to the fever, then it seems to come out of no where, and then drops off after a few days. His fevers come every 4-6 weeks. We try to plan for them, and write it on the calendar so we all know when to expect the next one. We are contemplating getting the tonsillectomy that the rheumatologist recommends. I want him to feel better, but I’ve heard that the surgery doesn’t always get rid of the syndrome; you just kind of take a chance and hope it works. What do you think?

     1. So much has changed since my last post. My son had gene testing done and it came back positive for having a mutated mefv gene, diagnosing him with familial Mediterranean fever, its a type of periodic fever syndrome but can affect his kidneys if he doesn’t take meds the rest of his life. We r american, from indiana…. how weird is that? We have no family history of this. Its good to finally know for sure. I recommend gene testing to all if u can. Our insurance covered it since we had enough medical data to back the need for it.

204. Oh, this is us! We also had a HORRIBLE week with a leukemia scare earlier this year. Our daughter just started cimetidine on Saturday and our infectious disease dr said they have a 60% success rate at their clinic with it. Her tonsils are huge, though, and I’m still trying to push to get them out. The ENT last year wouldn’t ok it because she is such a little thing (she’s 5 and weighs 29.6 pounds). However, as you all know, our kids don’t eat during these high awful fevers. We did go gluten free for four months and only had one episode during that time. Has anyone else tried this? It’s so nice to know that there are other families out there who are dealing with this crazy thing!

     1. We went gluten free in earnest this July, and now her fevers are lasting only 1-2 days and are less severe. They are still coming every 21 days, but I think the gluten free is definitely making a difference. (It’s also made our whole family healthier as a bonus!)

205. Well we got some news from the Ped about her bloodtests. Everything looked fine except one thing and it was the factor that leads to or is a sign for RA. Its low so the specialist wont see her yet but it is there and now we have to retest in 6 months unless something happens before then. At least I am not crazy and we have started down a path….we will see where this goes from here.
     Jessica

     1. I hope you get your answers Jessica! xo

206. My daughter has this and has been getting fevers since 1 yr. (She is 6 now) They come every 21 days on the dot.
     We finally got a positive diagnosis from a rheumatologist who tested her ESR, blood count, and something else I’m forgetting now.. Regular doctors just think its a virus or think you are a hypochondriac mom, so it is important to go to the rheumatologist. So frustrating. We have tried Upper Cervical Chiropractic which helps some folks. Also we have gone gluten free which shortened the length of fevers from 5-6 days to 2-3 now. Next we will try eliminating dairy and also homeopathic. High doses of Vitamin C helps others. Good luck to you all. It is so hard to see your kid sick every month, so hard to explain to people whats going on, and so hard to keep positive. Take care, Jenifer

     1. Thanks for the tips and advice from your experience. We are all here to learn what we can to better help our children. Hugs to you.

207. My step daughter is 12 years old. We have always been told that some kids just get sick a lot. My gut says that is not the truth. I have had her full time for about 4 years and she has had a fever almost every month for 2-3 days at a time. There were times we would take her to the doctor and other times we just dealth with it beause of time and money and we knew what they were going to say..oh its just a virus. Well last night I read through these posts and a lot of other info online and decided I wasnt going to leave the doctors office with that same old explanation one more time. We went in this morning after a 3 day fever. Of course it was gone this morning but we still went. I demanded more tests and steps to get us closer to figuring this out. I am leaning towards thinking it is juvenile RA. She has a lot of the symptoms. The Ped said it is very very hard to diagnose auto immune diseases. Apparently there are 2 rheumatologists in the state and they feel like all the peds send tons of patients to them, and that even then it is hard to get them diagnosed. So we still have a very uphill battle to climb, but they actually listened to me today. We have blood work scheduled for next Friday and we will start down this road of building our case for the rheumatologists. Wish us luck, and Praying for your family as well!
     Jessica

     1. Thank you for the prayers. Good luck to your stepdaughter. xoxo

208. I suspect my 5 year old has this. He had strep throat in March and has had a fever every month since then, except one (but the next month he had TWO episodes). He’s currently in the midst of one and we’re going to see his doctor tomorrow. I have all his fevers recorded on my phone. I’m going to print a spreadsheet to give to her and hope we can get a diagnosis soon. Thank you for this post. I do feel a bit crazy when I explain his fevers to pretty much anyone.

     1. So sorry to hear your son is having an episode. I felt crazy too. Hang in there. xo

209. yeah, I also live in Hawaii, and aside from the docs being total A##holes, its like they don’t even care. plus dealing with them doing nothing but pushing vaccinations on your child and chalking everything up to the flu, wich I grew up experiencing a diff set of symptoms related to the flu than what they consider. when your kid keeps getting sick every other week or month and it doesn’t come as an alarm to ur physician it really made me like WTF?!!! my son is 3 yrs, 4 in a month and last year he started developing the same exact thing, always a fever usually up to 102.4 f and now has benn experiencing headaches more frequently with the fevers, and always a slight ear infection…hes been sent home with me like 5-6 times already this year with ammoxicillian….ive asked my doc to give me a referral to see the ear nose and throat specialist, and he almost refuses too with the same promise every time, “well if it occurs again then maybe we’ll think about that” and im like dude its been frickin almost a year! with atleast 8 episodes! plus I have to deal with the fact that I share custody with his irresponsible mother, so I only have him 1/2 the week. ugg! im so frustrated…plus everytime my son sees this doctor he literally screams like satans trying to steal his soul. andthis is the only doc that he reacts in the manner twords, hes completely fine with any other nurse or er doc.and as far as vaccinations go, I urge every parent reading this post to do a youtube search on bill gates, who is the lead funding dueche in vaccinations. theres a conference he gave on population control where he stated and I quote “vaciinations are very effective in dealing with population control”
     after reading these comments I too am going to consider tonsil issues since it was very common in my generation that kids had them removed.

210. Hi, thank you for sharing your story. I found your blog tonight after our 3 year son entered another cycle of what appears to be a similar recurring fever. Each month he seems to have these episodes. Some months are worse than others.
     Living here in Hawaii, the doctors have attributed it to: an allergic/asthmatic reaction to the vog (volcanic smog) or to a virus. On occasion the reactions are combined with shortness of breath & an accelerated breathing rate upwards of 50+ breaths a minute. When we see him entering another cycle, we start dosing with acetaminophen &/or homeopathic allergy meds. (Often he has post-nasal drip that turns into cold like congestion/complications if we do not catch it quickly.)
     Seeing your child repeatedly in this sickly state takes a toll on you. After dealing with this for over a year now, we are moving away from Hawaii in an effort to provide a new environment for him. I honestly wonder if the fevers will continue. Beside the hope of your child growing out of RF, have you discovered any other means of treating, reducing, or eliminating these episodes? I would welcome any input.
     Thank you!

     1. Hi! Thanks for sharing your story as well! I have yet to find any other means of treating or reducing these episodes outside of what has been discussed on this post. I hope your son gets better soon – please keep us posted.

        1. These stories break my heart. These stories sound all like what I went through with my daughter.Have all these children been tested for Lyme Disease? Lyme disease, a tick borne disease,is a cycle disease which causes fevers. My daughter was diagnosed with PHFA by a infectious disease specialist over ten years ago. He wanted to put her on predisone.(which makes lyme worse, so I have been told). Later, after many doctors,found out it was Lyme Disease. She was treated with months of antibiotics and fevers went away. Most infectious disease specialist, and doctors, in my experience ,are lacking knowledge of Lyme disease. And did you know any condition that ends with “syndrome” is medically unknown condition. I would do more research and demand more blood testing, one being Lyme Disease,( even thou the current blood testing is not always accurate.) I never saw a tick on my daughter or even heard of Lyme Disease back in the day. I have learn so much .It has been a long and hard road. Lyme Disease is one of the most missed diagnosed, missed treated diseases in the U.S. and children are at higher risk. I wish your child well. best place LymeDisease.org

     2. I too live in Hawaii and my son had had these fevers ever since we moved here. 2 yrs now. Have you moved yet? Did it help? Doctors tell us the exact same thing. . Viral or allergies. Its getting ridiculous

211. Omg. this makes me well up….My son has had these reccurant fevers for 2 years now, (he is 5 1/2 years old) It’s been a roller coaster of testing, worrying about cancers, diseases, etc..but everything has come back normal. My heart breaks for him when he has an episode, he’s so little and helpless, and it lasts for approx. three days. I truly hope he outgrows it soon. If anyone is interested starting a mini support group/etc through facebook or online I am game! I would love to chat with other Moms who are dealing with this…Please send me an email if you wish- micksfamily5@gmail.com Thnx!!

     1. Hello! Thank you for your comment. I think a support group sounds like a great idea. It looks like a lot of parents could use the support.

212. Hi, Linda! As an individual who actually has Periodic Fever Syndrome (my pediatrician uses the acronym “PFS”), I would just like to say that it generally does end. I started having fevers ranging from 103-106 degrees when I was 5 and displayed almost the exact same symptoms (minus the seizure and stomach sensitivity) as your son. I am now a 17 year old college freshman attending one of the top universities in my state (I am not trying to brag; I am just providing evidence that while it sucks, it doesn’t totally take over your life), and I stopped have fevers when I was around 10. I have had certain single instances where it has seemed to return, but since it was only a one-time re-occurrence my pediatrician said it was most likely a result of some pathogen (like the flu or some other virus).

     When it comes to the fevers themselves, my mom used to alternate Advil and Tylenol every four hours to help reduce the fever. If you don’t like using that much medication, cold packs and lukewarm baths are also excellent fever-reducers (however, they are no fun for the person WITH the fever).

     I wish you and your son the best of luck in overcoming this!!

213. Hi linda,, same situation here,,my daughter always have a fever everymonth and it last for 5 to 10 days,, i dont know what to, its started when she is 1 yr old, she suffer from amoebiasis,, after that the next month she started to have a monthly fever for almost 2 yrs now without any reason,, we went to infectious disease specialist with complete lab test but she sed shes normal it was just a virus and she doesnt have a strong immune system,, i started to give her complete,vitamins to help built her immune system,but nothing change, im so stress,,, dontbknow what to do, we already try different pedia but i allways got same answer,,, just a virus,,,

214. Thanks for the piece. My grandson is going through this right now. He is 2 1/2. It is a little unnerving but reading your story makes me feel a bit better. His doctor has realized this pattern and his parents are keeping watch. In fact, it is the time of the month when he gets these fevers and guess what, he has one. Thanks again.

215. Hello Linda, we had one of our children with this exact thing, suffering for nearly 4 years. He just turned 8 in August. After every test there was to have on the universe and no answers, our gastro doctor did some research on the net and came up with this very same diagnosis. We had his tonsils removed on 30th April 2013, although this doctor and the ent doctor had never heard of such a thing or taken out the tonsils for this reason, we all agreed that it was worth a go. We were at the end of the road, desperate and full of despair. There was nothing left to test him for, nothing we hadn’t tried. His tonsils were never an issue all these years, they were sent to lab for testing and came back perfectly healthy and normal. We had one more episode exactly 4 weeks after the operation which was very mild and short lived. From there on – WE HAVE HAD 3 EPISODE FREE MONTHS. Our child is a totally different person – well, healthy, full of beans, fantastic appetite, putting on weight, has energy levels on par with other children his age, and has a new confidence in life that he lacked. I implore you, and all the other mothers that have spoken on this blog to GO FOR IT!! Get those tonsils out as soon as you can. Linda, I did send you a lengthy email going over our story a few weeks ago, did you get it? All the best, hope everyone can find a doctor that is willing to take out the tonsils, and start looking ahead from there. After nearly 4 years of living with this condition, I know full well that the past 3 months of great health is not by chance. All the best Linda and all you other mums, you are in our thoughts and prayers.

     1. Denise,
        I am curious to know if the fevers have still stopped? We are going on 4 years of this with my 6 yr old and have started searching for solutions again.

        1. Sure is cured Melissa. He is a ball of health. Tonsils removed lat April and he hasn’t looked back since. 4 years of illness cured so easily but we didn’t know about this weid syndrome back then. Go for it, all the best.

        2. Denise,
           Thank you so much for the reply that is great news on your older son! I am going to make an appt with my daughters Dr. and see if we can’t remove the tonsils and see if it works for us too! I am sorry to here about your 4 yr old son also having PFS, but at least you may have a solution for him. I have three children; 2- 6 yr old twins and a 3 yr old. I am hoping not to see this with my younger one, but so far I think she has only had one fever in her three years of life 🙂 So nice to talk to someone who has dealt with the same illness.

           Thanks again,

           Melissa

        3. Tonsils have now been removed (May 8, 2014) although it is still early we have not had a fever since. My daughters overall health has even improved appetite, color of skin, better rested, happier and I wished I would have done a long time ago.

     2. Hi, Denise.
        I’m so glad to hear that your son is better. Did your son experience sore throats or mouth sores with his fevers? What is the link to the tonsils, I wonder? My 3 year old daughter has been having these fevers (along with joint pain, loss of appetite, extreme fatigue) for the past five months. We know she doesn’t have one of the genetic fever syndromes (she was tested two years ago… and was ultimately diagnosed with leukemia). She sees the oncologist every month, so we know that cancer is not the cause of these fevers… But the docs seem to be at a loss for what might be causing her current fevers.

        1. Hi Taylor, sorry for the slow response. Yes we still have a very healthy boy after taking his tonsils out. There was nothing wrong with his tonsils so it took a bit of convincing to the ENT to do it as it was our only option left. We had tested and tried for everything else. Yes he did get a mild red throat while having these episodes but not aware of ulcers. He used to have aches and pains and not much of an appetite as well.
           Can you believe this?? One of our other children (we have 6) have started up with the same thing at exactly the same age – 4 years old. Has been having these episodes for 6 months, the same as our other child. 3-4 days of high temps, mild red throat and not much else. We have him booked in for the 8th March to get tonsils removed. We aren’t going to waste 4 years of testing and worrying like we did with our other son. Same ENT doctor doing it. Have a look at Rebekah’s post on here. It explained it really well to me as to how the body is rejecting an organ and in these cases – the tonsils. An interesting thing to note is our son’s inflammation marker was 50 and should have been 5 when he was having these episodes. That also goes along with Rebekah saying it is like autoimmune, inflammatory response. Will be very interesting if we get the same results the second time around. Hope so as tonsillectomy is not a nice thing, it takes 2 weeks to recover but well worth it in the end.

     3. Denis, I was relieved to read your post. My 6 year old son just had his tonsils removed 4 weeks ago for periodic fever and is now having another episode!!! It seems to be milder, I just pray this is the last one, it would break my heart if we put him through all this and now it doesn’t cure it:( . Do you know if this is common after surgery to have another episode?? It’s been a long year of getting the diagnosise, and I just want him all better.

216. I am almost relieved to read this as my son since 3 months has had high fevers consistently every month. We’ve been to multiple hospital and pediatric visit had so many finger pricks and tests done. For a while I thought maybe he’s teething he has 8 teeth and fevered with those.but with the past few fevers one occurring as I type I find myself unsure, unconfident and defeated because I dont know why this happens, and it makes me so sad and anxious when they happen we have an appointment at children’s hospital this Wednesday and I’m a nervous wreck but I’m anxious to figure this thing out.this article helps alot I’ve been all over the internet and this seems spot on.thankyou for writing this gives me a piece of mind

217. Linda we had our daughters toncels removed last like she was due to have a fever Saturday. Thank god no fever!! The recovery has been great so far!! Came home same day and ate everything and anything she saw. Lol she did take the perscription pain meds day she had them out. Then nothing. If I didn’t look in her throat and see they were out you would never know. I really was hesitant about doing it because of how she would feel after. So far couldn’t be happier. We had both adenoids and toncels removed. I also never used any meds to take the fevers away. I figured if I have a 8 out of 9 chance it could stop them I’m going for it! Now we are just praying they stay away. There’s a great facebook page for parents too.

     P.s. tried the recipe for the cantaloupe bacon pizza on you facebook page and LOVED it.
     One of the greatest things about living in jersey is the fruit and veggies in the summer!

     1. Thank you so much for your post! I think this may be what me son has. We are waiting on the results from blood tests and radiology to see what comes back. My son is 4 years old and has been running fevers almost every month for more than a year. Reading your post I felt like I was reading my life story! It’s nice to know that we are not alone.. Thank you.

218. Thank you so much for the information you supplied in your blog. my son who is eight soon to be nine has been going through fever spells for three years we have been to the pediatrician numerous times and every time we where told he had a virus so I started looking on line and found your blog I have charted my sons temps date and time and even how many days the fever last my son seems to be having spells every three weeks .I took the information to the pediatrition and she has finally said that there is some thing going on the sad part of it all is that my sons school is now trying to make me pay a fine because he missed 56 days of school last year due to fevers and has already missed the first week of school this year and they are saying that I’m not following the school attendance policy and that they are seeing a pattern in missed school so they are trying to make me pay five thousand dollers for violation of the school attendance policy my son goes to public school and I don’t think they can make me pay but they sure are trying. I had to go through a school board review for my sons missed school and on the day of it I took the excel spread sheet of all the fevers a graph of the possible trending for the future six months and all of my sons medical records and expence records to show that my son is not missing school just because he doesn’t want to go but that he is actually having medical issues and that I am doing my best to get them figured out by professionals. Even with all of this proof they are still trying g to make me pay a five thousand roller fine .I have taken all of the I formation I have to the school and the principal of the school is working with me to get some sort of waver of attendance so that I won’t have to pay any fines and so that my son can have the ability to make up any school work missed due to the reaccuring fevers

     1. Thank you for your comment and I apologize for the delay in responding. I cannot believe your school is trying to get you to pay. How awful! Please keep me posted and good luck.

     2. My sons school was giving me grief about him missing so much school. My son did not like missing either…he loves school…our specialist wrote a letter to the school and sent it himself. It explained what periodic fever was and that its not contagious and that he can stay at school if he likes and I agree with it and the school can give him motrin or tylenol as directed on bottle. Since then the school has been great. If he gets a fever they call me and they talk to him to see how he feels. Since the dr letter he has only come home once.

     3. I am so grateful to find this thread of commentary, my son is almost ten and we are on his thousandth (it feels like) ten day stretch of fever and misery…. thankfully our pediatrician is out of town and we got to see a coworker pediatrician today. He mentioned this but wants to rule out an underlying cause. I feel so much better reading others having the same problem. Although I’m sorry any of you and your children are enduring it?

219. At 9 months old, my daughter spiked her first 103 fever…and it’s been monthly and spiking at 105 ever since. After a few months, I stopped calling the pediatrician because I kept getting the “virus” answer. No other side effects that my daughter could communicate. A year and a half later, she has grown somewhat accustomed to her fevers. Today she was singing songs and jumping on the couch with a 103. I did finally insist on a referral to Children’s, even though my fever journal is showing shorter episodes overall. The 104 and 105 fevers are heart-breaking and scary. We will be waking her up for another dose of tylenol or Acetaminophen in an hour. I dread the testing we are in for, but I hope to get a diagnosis and real help. Thank you for your post! Feel less crazy and lonely already.

     1. We are not crazy! I felt the same way too. Glad I could share my story with you and to hear that it helped. You are not alone.

        1. We are in an episode right now- we had thought we were in the clear as they had diminished a lot but his first ever episode was when he was 18 months old on Super bowl weekend and we loved with everything 3 /4 weeks for an intense 2.5 years. Fevers spike in the winter months and reduce over the summer. We hadn’t had any episodes all summer but last weekend, around the Super bowl – the symptoms started back up again.. My son is 6.5 years old and his fevers sit at 103.4 on the low end and up to 106 on the higher end. He has had so many fevers over the years that the doctors tell us not to come in when his fever is that high. He has never had a seizure thankfully. It took us 4 years to finally get a diagnosis. We had been sent to multiple specialists like you all and frequenting ER and getting scared multiple times along the journey. We have tried gluten free and dairy free over the years too. Unfortunately we saw a Gastroenterologist who performed a colonoscopy on my 5 year old to rule out Crohns & Celiac. No one would agree on Periodic Fever syndrome despite my many efforts to propose this as a cause. They kept telling me it was so rare and not a possible cause for my son. Only for my constant questions and researching did I force my doctors to set up an appointment with an Immunologist who agreed with me on the Periodic fever syndrome. He did not not want us to rule Familia Mediterranean syndrome with my husband being from Italian and Spanish decent. We pray it is not that variation of the syndrome and hope that he too will grow out of this soon. He is a healthy happy energetic boy who plays on 4 sports teams. Watching him cry in pain in his legs, ankles and wrists is heartbreaking but we know this is an episode and it will pass. We keep him comfortable, rub his joints, keep him cool, and give him all the love in the world. We wish so much that the medical world would recognize this syndrome as more common place and help parents and children to navigate through this journey in a more effective and urgent way. I can’t imagine how many parents are going through this right now with their sweet angel and they have no idea what to do. The years of scary fevers , uncertainty, and fear should not be common place. I hope through all of us and our experiences we can y as many families as we can.
           Good luck everyone and May your sweet angels be blessed with a speedy recovery and a life where fevers are a distant memory.

220. Hi, my daughter had this every 4 weeks for about a year and a half. She was due to start school last september and I didn’t want her to be off every month. We had her tonsils removed last august and she has now been clear of the periodic fever for a year. We did use
     Prednisone a couple of times but giving children steroids regularly is not recommended. I live in the UK and the health service here are very reluctant to give it more than once or twice.

     1. We are hesitant of the steroids as well. We are exploring tonsil removal as well. I will keep you posted.

221. Thank you for this post! I am currently in the “document everything” stage as our little guy has been getting the high fevers every 2-3 weeks for 10 months now. We are currently working to rule out other things but an ENT just referred us to an immunologist to check for “periodic fever syndrome”. It is helpful to read another mom’s experience! Thank you!

     1. Document, document! I can’t say it enough. Best of luck to you.

222. Hi, I am so glad to find this blog. I am a doctor myself (OBGYN), and I have not heard of this thing until I started suspecting that something is not right with recurrent high fevers with my son. This is our third month now. He is almost 2 years old. It is really hard to say what other symptoms he may have, but we are not really seeing much else. I am making an appointment with a rheumatologist. My pediatrician, thankfully, already suspects this condition and referred us to this specialist. So, this is just to say that even someone who is a doctor may often feel really scared (and that’s an understatement, considering all the possibilities that this could be) and helpless when it concerns their children… Good luck to all of you! God bless

     1. This is to refreshing to read – that you even you as a doctor feel scared and uncertain. Thank you for sharing and for stopping by. Good luck to you as well. Hugs.

        1. My 20 month old also has been diagnosed with this. He has been running high fevers (usually 104-106) every month for 8 months now. He is on cimetidine three times a day and we also give him prednisone at the onset which usually aborts the fever. I am going to push for his tonsils to be removed. I cannot watch him get so sick every month. His fevers go from nothing to 105 within minutes. It is so scary. We just had an eposide last night (picked him up from daycare with 105 fever). The prednisone did stop the fever overnight. Hoping that was it until next month.

        2. I hate hearing so many kids being diagnosed. We too are in the middle of another episode and this one is especially rough. My husband and I are debating the tonsil removal as well. We want to give our little hero some relief. 2 years this month for us 🙁

223. Getting a child diagnosed is a journey in itself. Doctor will dismiss the symptoms as a virus over and over again. Then as it re-occurs you may be able to convince the Doctors to send you for other tests. Make sure you keep journals of everything. Diet, patterns etc,

     1. Yes, exactly!

224. Thank you for posting. My son is two and half and we have been dealing with the same thing for over a year. We did steroids for 3 months but it caused his fevers to go from 3-4 weeks to 2 weeks for a period of 3 months. He started his new episode today and it has been 4 weeks this time. One thing that has us asking questions is with his fevers he is also getting ice cold hands and feet and blue lips. However, ER visits, his oxygen levels are great. So I completely understand what you are going through. We pray too that he will just outgrow it eventually. Prayers for both of us momma’s.

     1. Hugs to you Momma! Thank you for sharing your story.

        1. thank you so much for posting (as I sit here in tears reading about this periodic fever). My 3 yr old son has had these for 2 years now and just this evening my pediatrician suggested he could have this…. he started with the high fevers 104/105 and was getting the “febrile” seizures, although he never went unconscious but just shook pretty bad and teeth chattering… I thought it was from his tiny little body going from a 99.1 to 103.3 within 6 minutes… and did so right in front of the weekend urgent care doctor… we are currently in the middle of an episode since Friday morning… hoping this one won’t last the 5-7 days that is usually does. I’m scared but now have hope that he might outgrow this one day…. we almost lost him when he was 4 weeks old… he had a 106 fever and rushed to ER.. he had a very rare bacterial infection (Strept C) that went sepsis and his organs were starting to shut down… 10 days in hospital we spent Thanksgiving in there and believe I am so thankful for them saving his life. and so I always wonder if these fevers came from a side effect from the infection he had as a baby… all in all, I can’t thank you enough for posting and sharing your experience, my heart now has a bit of hope because of yours and others stories on here…

     2. Jessica-
        My daughter has been struggling with this for 4 years now she used to get blue lips also. I had brought her in and same thing oxygen levels were normal such a scary feeling, but thought you might find comfort knowing my child has had them too!
        -Melissa

        1. Thank you. We still are struggling with the fevers and blue lips but now episodes have spread further apart thankfully. Now my son complains also about his pelvis area hurting too with each of the episodes. Strange. We have a well check next week hoping we will get some good information.

     3. We are on the road to a PFAPA diagnosis and with my 2 year old daughter’s fevers (around 104) her hands and feet are freezing as well! Have you gotten any more answers?

225. I think my 6 year old daughter has this. We are just going through the process of trying to get her diagnosed, so researching, etc. . . Thanks for this. It really resonnates with what we have been through, although slightly different in that we get the high temps but no seizures. Thanks.

     1. Thankfully we have only had the one seizure but it was scary enough. I hope your daughter gets better. xo

     2. im seeing this post is 3 years old almost. Any updates? I am going thru this currently with my 8 year old. She has no other symptoms but the reoccurring fever and no appetite when its present.

226. Thank you so much for sharing. We were told yesterday that my 2year old son has this. I am relieved that it was not cancer, I was hoping it would be something that we could cure with antibotics. The last year has been super hard and I thought at one point I was just crazy! The fevers are the easy part, its the joint pain, and the sleepless nights that really is just hard. I have 2 other kids that just dont understand. I praythat both our littles do not have to indure this much longer.

     1. Thank you for your comment as well. We feared Cancer also and even had a horrible Leukemia scare. I will keep your son in my thoughts. xo

        1. Hi my daughter who is 7 years is having same symptom .it actually started when she was 4 and went for a year .sometimes 30 days and then 15 days cycle.every doctor said viral.and now again it has began after 1 1/2 year its terrifying every month 3 to 4 days no school. She is tired ,tears always in her eyes as she cant enjoy her child hood

227. Im 21, started at 18 when the pattern started. Every 2 weeks with 12/10 pain everywhere and fever. Now its 5 weeks with milder symtoms(4/10).

     1. Marshall:

        Best of luck to you. I hope you are under the care of a qualified physician and will get the answers you need to improve your condition!

228. Hi! Just came across your post after googling “recurring fever.” My 15 month ok’d daughtee has been having fevers of 101-104 every 30 days like clock work. And every time we go to the doctor, we get the “probably a virus” response. We are going to the pediatrician for a Check up next week and I’ll definitely bring this up. Thank you so much for sharing!

     1. Document, Document, Document! I had charts and everything. Be an advocate for your child. We know our children better than anyone. We just had an episode last week. Hugs to you! xo

229. Thanks for sharing your story. I think my 8 year old daughter is going thru the same thing. We will definitely start charting the episodes to see if there is a pattern.

     1. Yes, please chart! It is proof. Hugs to you! xo

230. Thank you for posting this. I have been dealing with this with my now four year old daughter for over a year. We are waiting for genetic test to come back.it should be another two weeks. She started another eposed yesterday. Exactly three weeks later. We are going for a second opinion tomarrow for removing her toncels. I pray for the day I all stops. It’s nice to know I’m not alone. Praying for you xoxo

     1. Thank you! We just had an episode last week. Praying for you too. We have to stick together and support one another. xo

        1. Could I ask what bloods were taken to diagnose this? My 4 year old son has fevers every 21 days and that too after a prolonged atypical seizure but in UK they have tests to check crp and esr before they are diagnosed. We aren’t having much luck in getting a diagnosis.

231. I have a child with this codition hope he get better son.

     1. Thank you. We are still dealing with his condition, but hopeful it will get better. It’s a rough road.

     2. Hang in there mama! xo

232. My nephew had the same awful thing at age 12. Went on for 2 years then stopped dramatically around puberty. Joints were so painful he had to wear splints. I hope your little one will not have it any more

     1. We are hopeful it will go away and stop just as quickly as it started. Going on two years 🙁

     2. We are approaching year 2 and no sign of stopping yet 🙁

233. I am sitting in the ER with my son as I type. He has the exact symptoms you described. So far they have done blood work and a chest X-ray. Still do not have any answers. It is nice to know we are not alone in our experiences. Patiently waiting!!

     1. Sarah: My heart breaks for you. I teared up just a bit when reading your comment. It is so scary and I am sure you are so concerned. I wish the best for you and your little guy. Please keep me posted. Hugs to you. Stay strong, momma. xo

     2. My son is also going through the exact same thing! I get so frustrated seeing my son being miserable so often. I’m glad to know we are not alone in this

     3. Look up PFAPA…my 10m.o have had this problem and a friend on FB posted bout same symptoms…took them to remove the tonsils to rid of periodic fevers…

234. Thank you everyone for your kind thoughts and words. Last week was definitely a rough one, but this week he is back to his normal, wild self. This is a good thing. xo

     1. Hi Linda,

        I came across your post while researching for recurrent fevers. My son is 32 months old and he has had recurrent fevers in the past. I feel totally helpless and clueless.. He had a fever that lasted 6 days in jan of 2014. He initially started off with mild fever the 1 st 2 days and I didn’t treat him at all for that.. Then the fever actually peaked on day 3 with a 102 – 103 and finally ended up with a ear infection (no cold or cough but sore throat and tested negative for strep).. He again ended up having a fever for 2 days in March ( with exactly the same symptoms but cleared up in 2days). From April to July he had a series of upper respiratory infection with cough and cold with no fever. As of today July 12 th 2014, he has the fever again and I did notice a small mouth sore on his lower lip..The doctors are telling me that he is just unlucky and virus is the culprit.. We did a blood test and his WBC and platelet counts are normal.. However, my pediatrician has referred us to a specialist… Hoping to get some answers from her…will keep u posted..

        1. Hello Linda, my son has the same problem. Pls inform me for any new discovery.

        2. I hope you found your answers. My grandson gets the sores in his mouth, and on his tonsils every time. His legs also hurt. When he says his legs don’t work, we know PFAPA is coming. He also gets a different tone in his voice. It is ever so slight, but he talks different. And of course, his tummy hurts. Good luck to you and I hope your sweet boy gets diagnosed soon.

235. Oh Linda, I can’t imagine. C had Lyme Disease last summer and with it came multiple VERY high fevers. We were terrified. So hard to have them sick and not feeling well. Great post about raising awareness for this condition!

236. I am sorry to hear about you baby suffering this way. I had never heard of this before, but now I will be on the lookout for it. Thanks for helping educate other moms.

237. Awe I am so sorry he has to go through that! I hope he grows out of it. I agree with making the decision to asses the symptoms your self and go i somewhat armed with info on what is going on with your child. I have been right a few times about what my son has, though it is nice to hear confirmation and proper care to be taken with the diagnosis.

238. Thanks for sharing your story and helping other families to know the signs.

239. Wow. I never even heard of this until now. Scary stuff- thanks for sharing.

240. Oh this is so scary! I hate that you and your son have to live through this. You *may* want to consider going to a holistic doctor, a naturopath, or a homeopath, and you may also want to consider restrictive dieting (ie, Failsafe diet). I can only tell you that the when we’ve tried these remedies for our kids, not only did physical symptoms improves, SO did behaviors, sleep patterns, and academics (this is what the teachers told me.) I’d be happy to help in any way-even email me! In the meantime, sending you and your son good thoughts and prayers.

     1. In trees ted in this diet…my daughterm is on the process of a diagnosis. ..I’m so frightened for her

241. Watching our children suffer is not easy. I hope he outgrows this soon!

     1. my daughter started running fevers of a 105 at 1 1/2 the fevers would last 7 to 10 days, we lived at the emergency room. and dr. this went on for 31/2 more years. till a Dr told me he didn’t no what to do. I Kept a journal of every fever four times a day. its my miracle book. I had my dr send me to shands in gainsville florida. it took a year to diagnose her but least we no. I have been able to answer moms and help with numbers etc. I wish I had some to talk to baack then. you know your child better than any dr. please call me at 850-777-7110 anytime. my daughter had no symptoms, just fever. know its stomache aches, muscle aches.

        1. my son too just fever, no other symptom like stomch ache etc, he is actively playing, this is the 4 month he have fever every 3-4 weeks. \dr. said it could just be summer fever viral thing. thank you for posting this, i am not alone. christinejohnson.rn@gmail.com

242. Oh mama, I know EXACTLY what this is like. My younger son developed PFAPA when he was 2. We did the steroids and the ER trips and.. UGH. I feel for you. Thankfully his just stopped as randomly and mysteriously as it began. “They” say that most times kids outgrow it, so maybe your fever-free month is just around the corner! (hugs) Also, I found that using a period tracker (like My Days) on my iPhone was an easy way to keep track of his fever days and temps. Just a helpful tip!

     1. How long did it take for your child to outgrow this?

     2. Hi, at what ate did your son stop having fevers?
        Worried mom

        1. My dtr was diagnosed at age 8 lasted for 2 years was fever free for five years at she 15 fevers again she is 24 now and still having fever

        2. My son is now eight but he’s been having high fevers for the past 6/12 years he had a 104.9 fever 2weeks ago lasted 9 days

243. Wow I had no idea this condition even existed! Thanks for bringing awareness. I hope your son outgrows it. So scary!

     1. Don’t be afraid to let the doctors try the steroids with your child. It is such a small dosage and it took my son’s fevers away after about a month usage! My son has been fever free for 7 years now! We are very, very lucky. He suffered with this terrible fever syndrome every two weeks like clockwork. It shut him down for 3 to 4 days, every two weeks.

        1. I was so happy to find this blog a couple of months ago. My grandson just turned 3 and his PFAPA episodes started when he was 6 months old. We went though all that all of you have gone through. He finally got diagnosed at Dell Children’s Hospital in Austin.He first saw a pediatric rhumatologist who made the first diagnosis, followed by a pediatric infectious disease specialist, who confirmed it. He is like clockwork, every 4 weeks, straight to 104.8. He now takes the small dose of prendisone and it has made all the difference. Instead of 5 days, it is over in a matter of hours with him feeling only kinda bad for a few days, to feeling fine immediately. After reading this blog, we brought up the tonsillectomy with his specialist and after reading the research, she thinks we should do it. But I know there are some scary risks. I will check in with you all after we see the ENT at Dell Children’s. It is such an awesome hospital, with every pediatric specialist all down one hallway. The only problem is, we don’t live in Austin. It is funny that I got an email from this blog tonight, about chicken wings. Our Josh has been fighting a really bad stomach virus for the last 3 days and we have been so scared because we knew it was PFAPA time. It hit tonight. So on top of vomiting and severe diarrhea, his temp shot up and in his little voice he told me he has his PFAPA bug again. It tears your heart out. Thanks for being here. And my love and prayers to all of you.

        2. good evening Bobbie, i see you are wondering what other symptoms might come around.
           As for my 3 year old; joint pain (especially the knees), weakness on her legs, severe headaches, neck pain… at times runny nose and a mild rash. (i know there’s more symptoms but can not recall them all, she has been fever free for a couple of months) these symptoms did not start all at once, every couple of months she would have a new symptoms while having a fever episode. we saw many specialist in Austin, Tx and they all recommended a tonsillectomy (which she has not had yet).
           if any other questions or advice you can contact me directly at gigimkl@gmail.com

        3. My daughter is 7 & has 3 day episodes every 2 weeks. Done every conceivable test. Is she to old to be suffering from this? She is currently having an episode now.

     2. I am so happy I found this. My son is 2.5 and has had these fevers since June as and they come every two weeks like clock work. The symptoms are the same every time and start on a Wed. The high fever spikes Friday pm and last till Sunday pm.

        I to believe we have a special gift feeling that you should never ignore. I have been on top of this and we are going to see an Infectious disease specialist at our Children’s hospital tomorrow.

        All Moms trust your gutt and be diligent. We are our children’s best and biggest Advocate. I can tell you this from experience my 5yr old son was diagnosed at 3 with epilepsy and at 4 with mild autism(Aspergers).

        He has a fighting chance because I knew something wasn’t right and pushed the pediatrician for the testing.

        Lisa

        1. We too have been fighting for 18mths to have someone take notice of ours son’s condition. We have been told on so many occasions it is nothing…until we went to the ED again on the weekend and they bothered to run bloods and they realised how sick he was.
           His fever was masked with ibuprofen when we first went in but after 9 hours in the ED his fever went crazy and finally they realised what we go through for 3 days every month.
           We have been referred to rheumatologist and should see him in May hopefully.
           I am just pleased to finally have some sort of diagnosis for our son and to have now found this blog which makes us feel a little less alone with our situation.

     3. Thanks for sharing this. I just realized today that my daughter has had a fever once a month (around 20th of the month) for the past three months. I googled recurrent fevers in a toddler, and found your blog post. I had never heard of that syndrome before, but will be speaking to my pediatrician about looking into what could be going on.

     4. My babe had a tonsillectomy 2 days after she turned 2 and NO MORE FEVERS! It did take an infectious disease doctor to figure it out though. Good Luck 🙂

        1. I’m highly thinking about this surgery for my 7yr old son has had em Fever July 10 , sept 10 and today afterschool november 16 ranges from 100-104 there about 2 months apart each. It’s so frustrating when everyone thinks your crazy but I’m tracking all his fever down!!

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