I am responding to the woman with the 12 year old son -- I too have a 12 year old son that was finally diagnosed with PFAPA just about 4 months ago - the label of "PFAPA" does nothing to actually help the problem. He's still suffering every 35 days without fail. We too have done the whole gamit of doctors - pediatricians, immunologists, infectious disease specialists - nothing helped. We tried Tagament 800 mg. daily for 2 months - nothing.. I even went the holistic route after years of trying so many things and nothing worked. As I write this note, my son is upstairs drinking Gatoraid with 104 and we're in another cycle of this insanity. My son, Steven, had his tonsils out 2 years ago - they swore that was the ANSWER -- well he was fever-free for only 2 months, then it started again full force. We also did the steroid route -- no better, although it helps temporarily, it does quicken the cycle. Rather than 35 to 42 days we are now at 28 to 30 days. He is frustrated, missing school, missing sports, etc. - it's unreal that NO ONE can find something to help. My doctor wants us to see a rheumatologist next. Honestly, I will play along, but I have no hopes of anyone really "curing" this. But if anyone has any doctors or any positive experiences with something or someone actually helping, please please please let me know!!!
Mandy - Howell, New Jersey