PFAPA -what? - Rare Disorders Message Board

walli6 · 07-12-2008, 07:33 PM

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.

jenny1011 · 07-15-2008, 07:28 PM

We are going through almost the same thing right now with our 16 month old. I can't answer your questions but I can sympathize with you. However, I'm wondering if anyone out there has a child that actually outgrew the fevers and could tell us at what age and how the winding down of fevers took place. What was the pattern like near the end and how old was the child? I'm sure you are wondering the same thing.

walli6 · 07-17-2008, 02:30 PM

I would like to know everything about this rare disorder, mostly is it likely that her symptoms will worsen to include the mouth sores, leg aches, vomitting, etc? I spoke with the infecious disease doctor regarding her bloodwork today. He wants to run one test again to rule out the possibility that something else is going on. Also, to see if she cycles again on the same schedule as the last three times. Before the last three her fevers were a little farther part, but still got as high and lasted as long. So, we wait.

francis66 · 07-18-2008, 06:40 PM

My daughter was just diagnosied about 2 months ago with PFAPA. Her fevers started around 10 mo. old she is now 8 1/2. When she started we just noticed the fevers every month as she got older she would double over with stomach painabout 2. When she could talk she started complaining about knee head and eye pain , sore throat( white spots on back of throat), swollen glands,she would also vomit with each episode fevers would get as high as 105 . Fevers would last about 4 days then she would be fine the rest of the month. Latley she has been complaing of headaches everyday so we are looking in to that( might bethe Nasonex?) We have been to alot of Doctors and through alot of antibiotics and strep throat tests which were always negative. There is alot of Doctors out there that never heard of this syndrome. He has her on Prednesone during her fevers last month was her first dose.It seemed to help, Im expecting her to get a fever soon so I will see what it does this month. Reading these Health Boards there seems to be a lot of cases the doctor said there was only about 200 reported in the U.S.

jenfly737 · 09-22-2008, 02:15 PM

Well we are in the same boat that you and your family are in! We just found out my 20 month old son may have PFAPA. We went to an infectious disease and he sent us the a rhuematologist/immunologist. He ran a ton of blood work wich takes 6-8 weeks to get back. My son started the prednislone but personally I think it makes it worse. His fever goes from about 106+ down to about 101 but the last fever lasted 17 days, he had a week off and this one he has now is lasting 12 days. He recently developed hives ALL OVER so they are going to run another test to rule out something else. Before he started the prednislone his fevers were about every 4 weeks lasting 5-7 days but now they are lasting 12- 17 days and he doesn't get much of a break. The dr. did give a prescription for naproxen and it works well but I don't want to keep him on that too long. From what I understand they sometimes grow out of this by the age of 10 and a tonsillectomy helps almost in all cases. Any other onfo you could give me would help as well. Good luck.