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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3 Comments

Filed under health, periodic fever syndrome, PFAPA, the beautiful boys

3 responses to “Positively PFAPA

  1. Our (now 16 years old) had PFAPA when he was a toddler, with attacks that averaged 7 to 8 weeks apart. We went to Doctors, ENT’s, etc, and got nothing but head shaking. My wife began to do online web research, and discovered that a tonsillectomy frequently had good results, we had our son go through the procedure when he nearly 4 years old, and he has never had another attack since then.

    Do yourself a favor and read as much as you can online, about how successful a tonsillectomy can be, and convince yourself to have it done

    • Thanks for your comment! Our youngest did have his tonsils and adenoids out over a year ago, and so far so good! We’ve not gone that route for our oldest at this time because his episodes are much less frequent and intense, but we haven’t ruled it out. Do hope he’s growing out of it though.

  2. Pingback: No More Periodic Fevers? | mum2beautifulboys

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