Pfapa

[NicInNC, CNA]

Anyone ever heard of this? My daughter started getting fevers when she was 2. She would spike a fever between 102 and 104.7 (that was the highest and she had a ebrile seizure because of it) every month just like a womans menstrual cycle. Sometimes she would throw up once or twice. She would also get mouth sores in her mouth. Of course we were always told "It's just a virus". They did numerous bloodwork, but nothing ever showed up. Finally after almost a YEAR, we found a wonderful new pediatrician fresh out of school and after reading through her chart he said that something wasn't right. So we were sent to an infectious disease specialist at Brenner Children's Hospital (part of Wake Forest University Baptist Hospital). He got in touch with a doctor at Vanderbilt University and they had him perform DNA testing on her to test for FMF, Traps and a few other things. (Took a lot of letters and calls to the insurance company since they don't cover the cost of DNA testing, but since it was for medical reasons they finally covered the cost)

The doctor from Vanderbilt sent him the kit and he sent it back to them so we could get my daughter into a study there. The Infectious Disease doctor and our pediatrician worked together since the pediatrician had never heard of PFAPA. And so far, no other doctors around here have heard of it.

Anyways, they put my daughter on Prednisone at the onset of her fevers and that seemed to help shorten the duration of the fevers. Then he got her tonsils and adenoids out last summer and hasn't had a fever since.

I'm just wondering how many of you have heard of it and if more children are getting diagnosed with it. The only thing my daughter still complains about is stomach pain. But she's got constipation problems and is on Miralax (sp?). Whether the constipation has anything to do with the PFAPA is beyond me.

Here's a site with some info about from the study. Also, you can do a search on the net for PFAPA, you can find info.

http://padeh.net/Edwards.htm