Tag Archives: recurring fevers

No More Periodic Fevers?

If you’ve kept up with our family’s experiences with PFAPA, you’ll remember BB#2 had a tonsillectomy and adenoidectomy back in October 2013. Knock wood (because I’m still paranoid enough to do that whenever I say this), he hasn’t had any mystery fevers since! Yes, he’s gotten sick, but it’s been with coughs and colds, like other kids. We know there’s no guarantee that the fevers won’t recur (he still occasionally gets the mouth sores, so I know it’s not completely “cured”), but for now, we’re just grateful for this long break–for him, for our family.

Which is why we finally got around to having BB#1’s tonsils out this past week. I know, it seems odd that our younger child had surgery first, but because this syndrome was never as disruptive for our oldest, and because he was older when we figured it all out, we held out hope he’d grow out of it without surgery. But he’s 11 now, and still getting the fevers, about once a month. We did try prednisone with him and it did stop the symptoms, but like we experienced with his brother, the fevers seemed to come closer together–the last time we used it, he was sick again less than two weeks later. He was getting tired of getting sick, even if it was only for 24-72 hours at a time. And we didn’t want him heading into junior high missing school once a month. We all agreed tonsillectomy was our only option at this point.

So far he’s recovering well, eating lots of soft cold things, playing lots of video games. We have our fingers crossed that this is the end of it. Though I’m still pondering my bloggy future, I know people land here in their search for information on this syndrome, so I thought I’d share what I hope is our final chapter.

Looking for more information on our experiences with PFAPA? Start here.

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Positively PFAPA

The good news: BB#1’s periodic fevers respond quickly to Prednisone, cutting the episodes from a few days to less than one day. (This is also considered diagnostic: he does have PFAPA.)

The bad news: He had two fever episodes this month, four weeks apart instead of his more typical five-eight weeks. This is one of the side effects of this treatment; sometimes the fevers come closer together. We don’t know if that’s the case here, or it’s just a coincidence. Time will tell I guess. Still, another fever four weeks later is better than the symptoms recurring within days, which is what happened when we tried this medication with BB#2. And knowing that we have a quick treatment option on hand is a good thing, say, if we were to go on vacation. Which we won’t be any time soon, but still.

We’re hopeful that BB#1 grows out of this–from what I’ve read, kids often do by around age ten. But his tenth birthday is less than six weeks away so…Still, we’re not convinced a tonsillectomy is called for in his case, even though it seems to have worked for his brother. BB#2 has not had a classic PFAPA episode since before he got his tonsils and adenoids out in October of last year. Yay! That said, he’s had plenty of other regular colds, which he rarely got during the “PFAPA years”. Hopefully his immune system was just sorting itself out, because he still missed an awful lot of school last year. Admittedly many of those missed days were due to us being overly cautious, and the fact that he really doesn’t care for school (“Bueller, Bueller…”)

I won’t feel completely confident we’re out of the woods with either boy, well, maybe ever. BB#1 often had periods of six months where he didn’t have any fevers, which is why it took us so long to realize he was experiencing the same thing as his brother. And BB#2 once went eleven months with no fevers, so I won’t truly believed the surgery worked until at least December 1.

Until then, I’ll have my thermometer at the ready, and children’s Tylenol in the cupboard.

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April IS the Cruelest Month

Last year about this time, we spent three weekends in a row playing pass the stomach bug. So when BB#2 started vomiting a couple weeks back, I braced myself for a repeat of awful April. I left detailed lesson plans on my desk each night lest I wake up unable to drag myself into school without a barf bag.

Sure enough, BB#1 got it the following week. My husband and I washed our hands obsessively, though we didn’t really believe it would help.

So we breathed sighs of relief when it passed and we managed to avoid getting it ourselves.

But relief was short-lived when BB#1 missed school yet again last week, this time thanks to PFAPA. Well, at least we knew we’d have another couple months before the next episode; with spring kinda sorta here, surely this was the end of winter viruses!

I must have spoken this out loud and tempted the fates, because poor BB#1 immediately caught a cold, and then “lost his lunch” yesterday (his words; and his dinner too). Can it be long before his brother takes his turn? And it’s really too much to ask that my husband and I be spared this round too, right?

With all the other work, life and school (I rather stupidly decided to sign up for a course in my “spare time”) stuff going on right now, all I can think is, April can’t be over soon enough.

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Saturday Night Fever

We’ve been lying low this weekend as BB#2 recovers from his recent day-surgery. He’s coping remarkably well! But it’s looking like we probably should have gone for a tonsillectomy two-for-one (or is that four-for-one?) because BB#1 is sick. Though it’s believed PFAPA is neither contagious nor genetic, it’s now pretty clear to us that both boys have it.

It was fairly easy the past several years to assume BB#1 was just regular-kid-sick from time to time. After all, his fevers haven’t been as alarmingly high, as frequent, or as predictable as BB#2’s. There was never a period where he was sick every two weeks, I don’t recall him missing birthday parties or many major holidays, and just when we’d start to get suspicious that something more was going on, he’d suddenly be fine for several months, while his brother continued to suffer regular episodes.

But the fact is, BB#1’s symptoms are the same as his brother’s: strep-like, but he never tests positive for strep. In between episodes, he’s healthy, and (on the plus-side of this syndrome) he rarely gets actual colds or flu. The episodes last about 48 hours, and in his case happen every four-to-six weeks (he’s probably been sick once for every two times his brother has had a fever this past year).

So though it’s taken us a while to connect the dots here, we’re now waiting on a referral to the same children’s hospital BB#2 is seen at for PFAPA. The question is, what if anything do we do if he is officially diagnosed? Apparently, most kids grow out of it by age ten—BB#1 is already nine. Waiting another four years for BB#2 to outgrow this syndrome was no longer feasible, but maybe it is in the case of his big brother. But is it worth treating him with Prednisone when his fevers aren’t scary-high and the episodes are relatively short and infrequent, knowing from past experience it may work immediately on the symptoms but result in him being sick more often? And how often is too often for a child to be ill—how many episodes before tonsillectomy is the next step?

But I guess first things first—waiting to see if the procedure has worked for BB#2.

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My Kid Just Said (Part 31)

“I feel sorry for kids littler than me who have to have this.” BB#2, 6 years old, after waking up in the middle of the night from the pain of his recent tonsillectomy.

Me too buddy, me too.

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Periodic Fever Syndrome: It’s A Thing (Part 2)

Read Part 1

It was somewhat of a relief to have a name for what was happening (and to know I wasn’t crazy for thinking a fever for no apparent reason every two weeks wasn’t normal). But I see the diagnosis as sort of a catch-all. He doesn’t have one of the genetic fever syndromes, but what he does have has no known cause or cure. So really, there are still more questions than answers.

Don’t get me wrong, compared to some of the things it’s not, the things the doctors originally tested for, PFAPA is the least-worst thing he could have. It’s not life-threatening, he’ll grow out of it, and it won’t have any long-term impact (so we’re told—in all honesty, we worry his growth has been affected by not eating several days out of each month in these crucial years). But “short-term”—if you can call going on four years short-term—there has definitely been an impact.

First of all, seeing your child ill is never easy. Knowing he’ll be sick again within weeks, and there is little you can do about it? Is worse. My husband and I have missed a lot of work and school between us–I was very close to deferring teachers’ college for a year. Yes, we had a nanny at one point while this was going on, and that was a huge help, but naturally kids want a parent when they are ill—we wanted to be with him too, and we didn’t feel it was fair to leave the burden of a sick child on our childcare provider on such a regular basis. And of course, the many doctor appointments meant time off for one or both of us.

As a family we’ve missed a number of holidays and big occasions, or had to split up so some of us could put in an appearance. So far, BB#2 hasn’t missed too much school—JK/SK was every other day, and most weeks he only went to school two days anyway, so he missed a only day here or there. But he’s starting full-day grade one French Immersion in the fall, and days and weeks of missing school will be much more problematic. Socially though, he’s missed more birthday parties than he’s attended. His illness has meant his brother has had to miss out on a number of things too, particular when my husband is away and I’m on my own with both boys. And though his condition is not contagious, some of our own friends seem to avoid us in the days after an attack, just in case. I suppose I can’t blame them—having a sick kid sucks and everyone wants to protect their own family.

So what were the treatment options? We could continue treating the symptoms, and wait for him to grow out of it. Or treat the fevers with prednisone, which can stop the symptoms within hours, but may cause the episodes to become more frequent (this is also considered somewhat diagnostic—if the fever responds to the prednisone, it’s definitely PFAPA). Or we could opt for a tonsillectomy, which has been known to work in some cases, but is still no guarantee. None of these seemed ideal.

We saw surgery as a last resort. Why put him through an invasive procedure with no guarantee it would even stop the fevers? But I had no desire to be dosing my preschooler with prednisone once or twice a month either, especially not when it meant risking even more frequent fevers. We opted to wait for him to grow out of it.

Then after several more months of watching him suffer, we decided steroids might be the lesser evil after all. We filled the prescription—and watched in amazement as the symptoms disappeared. Unfortunately, he had another episode days later. The next month, the same thing. Yes, it worked to treat the symptoms, but it was as if his body refused to be fooled. He still got sick, more often. Not a viable long-term solution, when frequency was the biggest issue (though we did take a vial with us to Disney World one year, just in case. Fortunately we did not have to use it.)

So we finally asked for a referral to an ENT for a tonsillectomy. But a funny thing happened in the months while we waited for a surgery date: nothing. No fevers. It was too much to hope he’d grown out of it, but if he was only sick every few months instead of every couple of weeks? We could deal with that. That’s life with kids, no? We cancelled the surgery.

It seemed as though we’d made the right choice. He didn’t have an episode for eleven months straight. And even the few times he was ill after that, it wasn’t clear if it was PFAPA, or just regular kid stuff.

But this past Christmas, not ten days after our yearly check-up at the rheumatology clinic, where we’d shared the happy news that he seemed to have gotten over the whole thing, BB#2 got sick. All the same symptoms. And since then? He’s had six episodes in five months. We’ve missed Christmas dinner at my mom’s, Easter dinner at my mother-in-law’s, and last week, he missed his best friend’s birthday party for the second year in a row.

So we’re back on for a tonsillectomy, if we ever get a surgery date (the initial consult is not for three months! love our Canadian health care, but it can be a bit slow moving…) And this time we’ll go through with it, and hope it actually works. Because we’re exhausted, and there’s nothing else left for us to do, no other way that we know of to help our child.

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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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