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.