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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6 Comments

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

6 responses to “No More Periodic Fevers?

  1. vivian

    Oh dear. I fear my grandson may have the same thing, as his 104+ fever keeps returning. I hope you continue to update, and Good luck. I am sorry you need yo go through this.

    • Thanks! If you suspect PFAPA or other fever syndrome, I suggest tracking everything, and pushing for answers!

      • Hi there! My daughter had pfapa symptoms for more than 2 and a half years and I noticed in two occasions that when we stopped using cups with reusable drinking straws (that were very difficult to get cleaned thoroughly) the episodes stopped. In the first occasion we stopped using these cups for 4 months. During this period we had none episode. Then we started using these cups again and the periodic fevers with aphthous stomatitis, pharyngitis and adenitis returned. I really wasn’t fun using prednisone (prezolon) to treat this condition every 3 or 4 weeks and having an adenotonsillectomy was too drastic. So I went back and checked what we did differently few months ago and there were no pfapa episodes and the only thing we found was that we didn’t use this cups with reusable drinking straws. So for one more time we stopped using them and miraculously the episodes stopped.

        I just thought to share this with you just in case (one in the milliion) it helps a little bit. I have a blog describing my experience here – https://pfapahelp.wordpress.com/

        My regards
        Van

      • Interesting! That is actually one of the things we tried early on, though it has been years since they used straw or sippy type cups, and the fevers still came 😦 They’ve has unexplained breaks over the years, but it always started up again. So far so good after surgery though, knock wood. We know it recurs for some people after that though too, so we still have fingers crossed!

      • Thank you for your reply and your feedback. Most likely for us it was just luck and there was no association. But I just thought to share my experience. The cases are so rare and it was very difficult to find any information or get any feedback from other parents. I am glad it is going well for your kids. Fingers cross, we will have to worry again for our kids when they will be teenagers for other reasons.. 🙂
        My best regards
        Van x

  2. I am glad everything is ok for you. I went through something similar with my older daughter. It was difficult for us and our kid for a couple of years. We did consider having tonsillectomy but in the end PFAPA just stopped. I was trying to find answers of why this happens and what should we do. I kept logs of what she was eating, drinking etc. trying to figure out if there was something we did that triggered the periodic fevers.

    In the end I noticed that when we stopped using cups with Reusable Drinking Straws she just stop having them. First time we stopped using these cups for 4 months. During this period we had none episode. Then we started using these cups again and the periodic fevers with aphthous stomatitis, pharyngitis and adenitis returned. Then we stopped again and never used them since and everythin is ok. I understant that this is a very long shot to suggest that this is the cause but I just thought to say that incase one in the million for some kids at least might help. I have a blog describing my experience here – https://pfapahelp.wordpress.com/

    My regards
    Van

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