Periodic Fever Syndrome: It’s A Thing

Our youngest was sick again this week. And I’m sick of saying that. But, this is our life. Bear with me, this could get long.

When he was around two years old, BB#2 got sick. A lot. Yeah, pretty typical for a two-year-old, you’re saying. Except he didn’t go to daycare, and though his older brother had just started JK, he wasn’t getting sick, at least not at the same time or with the same frequency. And #2 wasn’t getting colds or coughs—he’d just have this crazy high fever with no warning, be lethargic and have no appetite for several days. Then he’d be completely fine. I’m not one to run the kids to the doctor only to hear what I already know: rest, hydration, medicine to bring the fever down. The last thing I wanted was to be placated with a script for unnecessary antibiotics. For a while I figured it was his body doing what it was supposed to do: fighting off germs. Most of the time we just treated him at home.

But he seemed to be sick all the time, and we started to get worried. We were missing out on holidays, swimming lessons, cancelling plans on the weekend, and missing work. We started to take him to the doctor or a walk-in each time. At first they brushed it off as viral. He’d usually be perked up on ibuprofen or already over it by the time we got in to see our own doctor. It was winter, and no doubt she saw many such children brought in by over-cautious parents every day. Strep was often suspected, though the swabs (when they were taken) were always negative. And still he got sick.

So I started to track the episodes. And every two or three weeks seemed like way too often for a toddler to be getting sick, especially one who was at home with a nanny, who was rarely exposed to other kids, and who never passed his illness on to anyone else in the house. What’s more: I realized could predict his next episode almost to the day.

A couple of times we did give him antibiotics, just in case it was strep. But during one round, I took off his jammies and freaked out when I discovered his entire body was covered with hives, and his joints were swollen. He wasn’t bothered by it, but it looked awful. Ever since, I’ve been adamant about getting an actual diagnosis before giving the BBs antibiotics. This is harder than you might expect.

Everyone had a theory. His brother was bringing germs home (even though he wasn’t getting sick nearly as often.) Someone suggested perhaps our nanny was a carrier for something (despite the fact she’d been with us for a year before this all started). A few suggested having the house tested for mold (but would an environmental issue cause fevers? And no stuffiness or coughing? Besides, we were living in the same house we’d lived in the previous two years, so why would he be reacting now?) Someone even suggested it was my milk (because I was nursing in the early days—and thank goodness, since breastmilk was sometimes the only thing that kept him from dehydration.)

I worried my green cleaning wasn’t enough. I pitched sippy cups and reusable twisty straws that might be harbouring germs, and started soaking water bottle tops in vinegar before washing. I replaced his pillowcase daily and became (more) obsessive about replacing toothbrushes. And nothing changed.

In desperation I went online. I didn’t find much about kids with regular, predictable fevers, but eventually I came across something that sounded almost exactly like what we were dealing with: PFAPA. I even mentioned this as a possibility to our doctor, but she wasn’t familiar with it. It seemed a long shot.

Then one day I was finally able to bring him in to the doctor at the height of his fever, with no medicine masking the number. Seeing him lying there, burning up, almost unresponsive, with no other symptoms to explain it, she asked if he was like this every time. Yes! And she sent us to the hospital right away.

There were lots of blood draws, a referral to a pediatrician, lots of going over and over my months of calendars tracking his episodes, hearing things I had already read in online journal articles myself. Eventually we ended up at a major children’s hospital, where more tests, including a genetic work up, were done. The diagnosis: PFAPA.

In other words, I had diagnosed my own kid on the interwebz.

So what next? Read Part 2

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20 Comments

Filed under child care, health, parenting, periodic fever syndrome, PFAPA, random, the beautiful boys, working parents

20 responses to “Periodic Fever Syndrome: It’s A Thing

  1. Wow, Andrea… will watch for Part 2.
    My youngest had a similar thing… but would only last a day… and then we would carry on… Lasted until she was a preteen… very random and we still don’t know what that was about! Tougher stuff for you, I can tell…

    • Lately his episodes are about 48 hours, which is at least better than 5 days! I have heard it can last until about age 10, but I admit, I really hope we don’t have 4 more years of this!

  2. Good that you had it diagnosed at last.

    • Yes, there is some relief in knowing this is something that has been seen before, even if little is still known (more on that in my next post!)

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  4. Techieang

    I must have been very scary for you to watch your son go through this every few weeks. You advocated for him and now have a diagnosis. I worry about all of the children whose parents don’t have the skills or means to seek out help and be persistent. Your son is lucky to have you advocating for him.

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  7. Stay Strong. Our daughter has been dealing with this for 2 years. Each month lasting 3-7 days long. It’s been crazy. Dozens of Doctor visits. Tests and more tests. Now visiting Rheumatology and possible ENT for tonsillectomy.

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