Hi my name is Kate and my 2 year old son, Jackson, was just diagnosed with PFAPA after 18 months of being very sick. He has been in and out of the hospital 8 times in the last year and finally was diagnosed with PAFPA in Jan. He had to get a lymph node in his neck removed but of course they found nothing. He gets fevers every 5-6 weeks like clockwork and has them for 5-6 days. They stay between 102-104 and we give meds and baths, but nothing seems to help. He seems to be very uncomfortable at times, but can not clearly explain what hurts yet. He has never had strep, but had 16 ear infections in 12 months and that is after his tubes were in. He has fibril seizures occasionally, but for the most part is just miserable every 5-6 weeks when his cycles start. His infectious disease doc who we love, has talked to us about possibly removing the T&A? Does this work even if he has not had strep? Also, does anyone have more than one child with this? We want more kids, but are afraid of taking on another baby with Jackson always being in the hospital.
I have four children and only my youngest has hereditary periodic fever syndrome. I don't know if it helps, but my oldest has severe asthma (We just had two surgeries to try to help) and he also has had several hospital visits. In nine years, we've had one major surgery for a life threatening birth defect, 2 other surgeries, probably 8 to 10 different hospital stays, 2 broken bones, stitches, and more. But even with all that, I would have 4 kids again in a heartbeat. The crazy thing is 95% was unrelated to the PFS!! Go figure!!! With kids there's no guarantee, but you just deal with life as it comes!!! If someone gave me a script of what was to be, I probably would have run scared the other way!!! However, you always the strength to meet whatever comes!!
Quote:
Originally Posted by kmob1220
Hi my name is Kate and my 2 year old son, Jackson, was just diagnosed with PFAPA after 18 months of being very sick. He has been in and out of the hospital 8 times in the last year and finally was diagnosed with PAFPA in Jan. He had to get a lymph node in his neck removed but of course they found nothing. He gets fevers every 5-6 weeks like clockwork and has them for 5-6 days. They stay between 102-104 and we give meds and baths, but nothing seems to help. He seems to be very uncomfortable at times, but can not clearly explain what hurts yet. He has never had strep, but had 16 ear infections in 12 months and that is after his tubes were in. He has fibril seizures occasionally, but for the most part is just miserable every 5-6 weeks when his cycles start. His infectious disease doc who we love, has talked to us about possibly removing the T&A? Does this work even if he has not had strep? Also, does anyone have more than one child with this? We want more kids, but are afraid of taking on another baby with Jackson always being in the hospital.
Hi my 5 1/2 year old has been having fevers every 3 weeks for about 2 1/2 years..we have finally decided to have his tonsils out this Tuesday..I am very anxious about surgery, but Dr. Licameli here in Boston has treated 50 patients and with no explanation the only way to stop the cycle is to remove the T and A. We have been giving him Cimetidine over the last few months and his fevers have still come every 3 weeks, but not as bad!! He has not really had strep and his tonsils appear fine..we are hoping and praying that this will help end this for the poor child..it has completely knocked him out every few weeks for almost 3 years and he will be in first grade next year and hopefully this will end the cycle!!
Thank you both for the insight. Jackson is going through a very bad cycle right now and we have a consult w/ the ENT doc on Friday for T and A removal...wish us luck. We are also going to start trying for #2. What ever happens is meant to be
Hello. my daughter was just diagnosed with PFAPA for the last 6 months we have been in and out of the hospital, all negative tests and finally now the our inf disease finally found this the tough one is that she has seizures everytime since oct of last year she has had a seizure with each fever which comes from every month to sometimes every two weeks. One time she had two seizures in on day the second lasting 45 mins. and had to be intubated. This has got to be the toughest thing I have had to endure Im an emotional wreck I dont want her to have any more seizures and now that I know what she has I have more fear. The doctor said that even if we take her tonsils out it wont make a difference is that true I dont get it, we have ENT next week i just want her to have a normal life.
2 year old diagnosed with PFAPA 
