Thread: PFAPA -what?
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Old 07-12-2008, 07:33 PM   #1
Junior Member
Join Date: Jul 2008
Location: Wyoming, MN
Posts: 10
walli6 HB User
PFAPA -what?

My daughter may have PFAPA I'm still a little stunned! She has had frequent high fevers that last 3-5 days and have gone as high as 106.5. This started right around age 1. We were told she had a kidney infection, which was treated and then followed up with the reflux test. My doctor has been pursuing bladder infections every time she has a fever episode. The fevers ran about 4-6 weeks apart, but lately have been coming every three weeks like clockwork. She is 20 months now. We were referrred to a infectous disease doctor. He is quite sure it is PFAPA, but is running all the other tests to rule anything else out. This seems a little crazy, my daughter may have a cronic rare disorder that may or may not go away! We've already been told about various treatments - prednisone, removing tonsils, etc. I guess what I am wondering is does this intensify as a child gets older? Right now she gets the fever and feels pretty low, but does not have mouth sores or any of the other symptoms I have read about. She cannot verbalize all her aches and pains yet, so I can't be sure about headaches and leg aches. Are there degrees of PFAPA? Which treatments work best? Just help - I'm relieved that there may be a reason for the fevers, but quite scared for her too.

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