This post contains affiliate links.
Disclosure: This post details recurring fever in a child and our diagnosis and experience with periodic fever syndrome. I am not a doctor. I am a mom sharing what my son experiences every month in hopes of helping another mom. Please speak to your physician and advocate for your child.
The photo above was taken on August 19, 2011 and began what has been a long, almost two years, of recurring fevers and an eventual diagnosis of Periodic Fever Syndrome.
This is how it all started.
On August 18, 2011 my family and I were on vacation in Texas. We had just returned from several fun-filled days in San Antonio, Texas, enjoying Sea World and the Alamo. After San Antonio, we made our way to Dallas to spend time with family. While enjoying a movie with cousins, my two year old on started to seizure in the movie theater. We immediately removed him from the theater and tried to assess what was happening. He was completely unresponsive. My brother-in-law drove us to a nearby hospital and we ran my son into the Emergency Department.
The Emergency Department nurses and physicians assessed my son and took his temperature. His temperature was an alarming 105 degrees. We were rushed to a treatment area and my son was hooked to an IV and given Ibuprofen and steroids to try to return his temperature to normal. After many hours in the Emergency Department my son started to respond to the medication and we were eventually discharged with instructions to keep his temperature down and follow-up with our physician once we returned home. If the had another seizure, they wanted us to return.
Once back home, I followed up with my son’s Pediatrician and gave him a summary of what occurred in Texas. I had all of my paperwork from the Emergency Department and they were added to my son’s medical records. Several weeks later, my son developed another fever. This time his temperature was 103 degrees. I took my son to the Pediatrician to get checked out. After a full examination, the Pediatrician concluded his fever was the result of some virus and told us to go home and wait it out. Several days later my son was back to normal and I didn’t think anything of the fever.
About a month later, my son developed another fever. Again, it was on the higher range and once again, I took him to the Pediatrician. This same pattern went on for months. My son would develop a high fever with no known cause, get sent home from preschool, I would take him the Pediatrician and the doctor would tell me my son had a virus.
It took several months of the same thing, a very high fever occurring every 4 weeks, before I started to see a pattern and began raising red flags to my Pediatrician. At first my Pediatrician did not see the pattern (because in all honesty, I didn’t take my son to the doctor every time he had a fever) but I knew something was wrong.
To assist my Pediatrician with a proper diagnosis, I started to chart my son’s fevers. Every time my son developed a fever, I would log the date, time and thermometer reading in an excel spreadsheet. The pattern was almost immediately evident. My son was developing a fever every 4 weeks. Based on this pattern, my son’s case was handed over to our local children’s hospital and he underwent significant testing. The hospital’s specialists tested his blood and urine and were looking for scary things, such as leukemia, lymes disease, juvenile rheumatoid arthritis and other blood disorders. All those tests came back negative and my son was eventually diagnosed with Periodic Fever Syndrome after visits with an Infectious Disease Specialist.
According to information received from our physicians and our own independent research, periodic fever syndrome is when a patient experiences recurring fevers which are not the result of an infection, allergy or other condition. It is also known as PFAPA or FMF (Familial Mediterranean Fever).
So, what does this mean for my son? Here is what we experience when my son is having a Periodic Fever Syndrome episode:
– Episodes occur every 3 -4 weeks
– My son’s temperature ranges from 102 – 104 degrees
– Pain in his legs and abdomen
– Upset stomach or loose bowels
– Limited appetite
– Decreased activity
– Restless nights and difficulty sleeping (him and me)
– Change in temperament prior to episode
– Noticeable change in shape and look of eyes
How do we cope with Periodic Fever Syndrome?
– Endless supply of Ibuprofen (Acetamenophen does not work on my son’s fevers) which I administer according to the medicine’s instructions until the fevers stop. (ours last 3-4 days)
– Temporal thermometer so I can check his temperature when he is sleeping
– Educating his school so they know what to do when he develops a fever (it is so important to make sure his fever does not get out of control)
– Help others understand my son has a syndrome and not a virus or illness and therefore is not contagious
– Encourage lots of fluids
– Offer other types of nourishment, such as smoothies, shakes and popsicles to get some sort of substance into my son’s system, while also offering a cooling effect
– Lots of rest and downtime (movies, games, coloring, snuggles)
Note: Our physician has offered steroids. My husband and I struggle with the thought of steroids and have opted not to use them at this time.
Aside from the recurring fevers and his diagnosis of periodic fever syndrome, he is otherwise a healthy, happy boy and is developing and growing at a normal rate. We are going on close to two years and the episodes have yet to subside. We are hopeful he will outgrow the condition, which is a possibility.
While this blog is very much a food and drink blog (with an ocassional dash of life), I feel compelled to share with you a little insight into me and my life. Perhaps it is because we are in an active episode (103 fever) now and my son is on my mind, or maybe it’s because I remember what it was like at the beginning stages of his syndrome when I turned to the Internet to try and find some answers. And, while this post is not meant to provide medical advice it is meant to help whoever is reading this know they are not alone.
If you see a pattern of recurring fevers in your child I leave you with this – pay close attention to your child’s fevers. Chart the fevers, advocate for your child and make sure your Pediatrician takes you seriously. We know our children better than anyone and we are the ones who are up late a night trying to calm a high fever. I believe moms have special instincts when it comes to their children. Trust your instincts.
For more information on periodic fever syndrome, please check out these reputable resources:
Update: As of June 2014 my son is still experiencing fevers on a monthly basis. We met with an ENT to discuss a tonsillectomy but our ENT has reservations as he has performed this surgery before on children with this diagnosis and results were not 100%. Meaning, the fevers continued post surgery. I’m sure I could press the issue and see a new ENT but I have horrible feelings about tonsillectomies.
Update: December 2014, we have noticed fevers are reducing in frequency. My son still gets them occasionally but they are no longer occurring on a monthly basis. We are hopeful he is outgrowing the condition as our doctors suggested might happen.
Update: November 2016 – My son is nearing 8 years old and is the epitome of health. Growing rapidly, 75% for height and weight, extremely active and athletic. His fevers have drastically reduced. His last fever was several months ago and appear now only once in a while. I never thought we’d get to this point, but here we are. We never opted for a tonsillectomy or steroids. Just treated each fever as they occurred and continued to support his health with a proper diet, rich in whole foods, and a daily multivitamin.
Latest Update: February 22, 2018 – I get a lot of comments on this post and people always ask me if this is still post/thread of commenters is still active. The answer is YES. As of today, my son is 9 years old. We are in the middle of a flare right now. My son still get fevers, although not as frequent or consistent. I thought he would have outgrown this syndrome by now but unfortunately we are still a part of the Periodic Fever Syndrome Club (formally known as PFAPA).
It is getting harder with Periodic Fever Syndrome as my child gets older. My son has a demanding sports schedule and as he gets older it is getting harder and harder to miss school days. My son is otherwise a healthy boy; active, has a huge appetite and is super fit and strong. I have started to supplement his daily multivitamin with a chewable Vitamin D and fish oil. I also give him tart cherry juice. I’m confident that these additions to our daily care plan are reducing the frequency of my son’s fevers. (Again, I’m not a doctor – please ask your physician before starting your child on any vitamin regimen).