This episode was a long one - 6 full days. Usually it is over by day 5. But day 5 was one of her worst days. High, high temps (105.5) and Motrin wasn't working this time. Tylenol actually worked better for us this go around. And several warm baths. I just can't watch this again. I plan to call Ella's pediatrician tomorrow to see if he will give us a referral to an ENT. I, at least, want to talk to one about pfapa syndrome. I feel that they may have more experience than any other doctor. I am very grateful for the facebook page (pfapa child). It is so nice to 'chat' with moms that are going through this with their kids. Sometimes you feel that your child's symptoms are doing something different and not pfapa normal. So it is nice to turn to them and ask questions and advice.
Ella isn't a 100% but at least getting there and hopefully stay that way. I hope her next episode doesn't return for a while but I am learning anything is possible with this syndrome. Below is a picture she just drew me :) My sweet girl. I love how she tried to write "Mommy" up at the top corner all on her own and lots of hearts :)
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My 2 1/2 yr old daughter has PFAPA. We've battled it for over a year now. We are considering the tonsillectomy and currently use prednisolone. We have had a little luck with probiotics spacing out the fevers by a few days. Trying the tart cherry juice now. Soooo frustrating! Prayers for your family. We completely understand!
ReplyDeleteVitamin D therapy worked for us. There is a study out there and we tried giving an adult dose of vitamin D and have not had an episode in a year.
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