The first time he had a high fever was in August of last year. He was 8 months old and our pediatrician diagnosed an ear infection and what looked to be the beginning of a throat infection. He said that it was strange for Leo's fever to be that high from an ear infection (I think it was 103 at that point) and that if it got worse that night we should take him to the ER. That evening, even with meds and cool baths, his fever spiked to 105. I rushed him to the ER in a panic and after all the tests and swabs and a chest x-ray the doctor said Leo just had a cold! He thought it was strange that Leo's fever was so high as well and recommended alternating between children's motrin and children's tylenol within a 6 hour period to keep the fever from getting that high again.
Exactly a month later the whole situation repeated itself. Persistent fever that spiked to 105 and didn't want to go down even with meds, the ER trip and all the scans... it was deja vu. This time the diagnosis was enterovirus and pink eye. His big brothers had just started public school the month before and it seemed like Leo was just catching everything they were bringing home from school.
We had a break from illness in October and most of November, but by the end of November my oldest had strep and then Leo caught it as well. He also had a double ear infection with persistent fever again. In December we spent his first birthday at the doctor. All three boys were sick but Leo had it especially bad, testing positive for the flu, RSV, and a double ear infection accompanied by those high fevers again.
Three weeks later Leo's fever was back. This time he did not test positive for anything. Ryan and I were confused and worried but thought he might just be one of those kids who get feverish every time they're teething!
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| The morning after Leo's first ER visit |
Three weeks later, on February 2nd, Leo and his older brother were both sick. (We were really OVER the non-stop germs from the school by this point and wondered why our kids could not stay healthy for more than a few weeks at a time. In the five years I homeschooled my older boys they had never gotten sick so often! I feel bad for public school teachers who have to deal with so many illnesses in the classroom all the time!) Connor just had a cold but Leo had the flu again. My poor boy.
One month later, on March 2nd, Leo had a high fever again. The fever reducers we had to give him always caused upset stomach and diarrhea and when Leo tested negative for flu, strep, RSV, etc, we asked for a urinalysis. Sure enough, he had developed a UTI and needed antibiotics.
In the next few weeks the COVID-19 pandemic started picking up speed in our state and the boys' spring break kept getting extended. Then came the official announcement that the schools would not be reopening for a while and we transitioned to online distance learning instead. We thought the silver lining would be that Leo would stop catching everything the boys came in contact with at school...but then on April 7 (after weeks of lock down and self-quarantine!) his fever returned. We did phone consultations with our pediatrician (due to COVID precautions) and he prescribed antibiotics for Leo. Six days later his fever shot up to 105 and we knew he needed to see our doctor in person. The visit had to take place in the car (again due to COVID) and the doctor heard congestion in Leo's lungs and recommended that he be tested for COVID-19. We spent three awful days not knowing if he had it or not and I was pretty much praying the entire time! We were so grateful to God when Leo's test results came back negative! He was diagnosed with bronchiolitis but thankfully albuterol treatments in the nebulizer helped him recover quickly.
Then about a month later the cycle started over....and we realized we couldn't wait until the pandemic was over to pursue answers about Leo's recurring fevers. We got a referral to an immunologist and his appointment was set for June 4th. He started with his next fever two days before the appointment and was almost turned away due to concerns about COVID. Thankfully Ryan was able to convince them to see Leo anyway since the fevers were the whole reason for the visit. The doctor was very surprised that Leo was talkative and playful and in good spirits even with a 102 fever! He is one tough little boy! They did blood work and set a follow-up visit for two weeks later. Two possible diagnoses that were mentioned were cyclic neutropenia or a primary immunodeficiency disorder.
As I started researching those possibilities I prayed that Leo wouldn't have either of them and kept searching for other possible causes for his recurring fevers. PFAPA is one syndrome that kept popping up. I had read about it before but dismissed it because in the past Leo's fevers had almost always coincided with the various illnesses going around at school or church. I wrote it down on a post-it anyway to remind us to bring it up with the doctor. At Leo's next visit the doctor happened to see the post-it and said "Oh! I was just going to talk to you about that!" Leo's test results showed that his white and red blood cell counts were normal (thank the Lord!) but that he had an elevated erythrocyte sedimentation rate which is indeed a sign of PFAPA.
PFAPA stands for periodic fever, apthous stomatitis, pharyngitis and adenitis... and it makes you just as miserable as it sounds. Flares last for a week or so and come back every 21-28 days with some or all of the symptoms in the name. It also causes headache, joint pain, and upset stomach. My tough little boy has been dealing with so much! Most kids outgrow it sometime after age 10 and in the meantime a short course of steroids can end each episode quickly. (Although the side effect of the steroids is that the flares can happen more often.)
We got Leo's diagnosis on Friday, June 19th, and based on our fever tracking we knew Leo was due for a fever flare within the next few days. Sure enough by Monday evening his fever started. He had been fussy and uncomfortable all day Sunday and Monday, didn't have an appetite and was cradling his wrist like it hurt. We gave him a dose of prednisolone as soon as his fever presented and within 3 hours it was gone and did not come back! I can't tell you what a relief it is to finally know how to treat his fevers!
Over the next few days we checked Leo's temperature morning, noon and night and were over the moon that it was always normal! The steroids' success in stopping the flare is actually another diagnostic tool used to confirm cases of PFAPA. The meds stopped all his other symptoms too and Leo went right back to being his usual (non-flare) energetic self!
We are currently on day eight post flare and are watching Leo closely for signs of the start of the next episode. His immunologist wants more labs done during the next fever so we'll have to go get that done before giving him steroids. Our prayer is that the flares can come less frequently as time goes on, and that he will not need to be on steroids so often. We also hope he can outgrow this sooner rather than later!
I wanted to write about all this so that any other parents or caregivers going through recurring fevers with their little ones could possibly benefit from our story. My advice is to start logging your little one's symptoms and fevers so you can have an accurate history to share with your doctor. We hadn't documented Leo's fevers at first so my homework after Leo's first visit with the immunologist was to go back through all my social media/text messages/pictures to create a timeline of his health. We also got a print-out of any medications he had been prescribed from our pharmacy and that helped me find all the exact dates I wrote about here. Now I have a file that I update with every new flare or symptom as they come.
In the meantime I am praising God for every healthy and fever-free day we get!
-Val
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