PFAPA or Periodic Fever Syndrome - Rare Disorders Message Board

bdettis · 01-23-2001, 02:09 PM

My 3 year old son has been diagnosed with PFAPA. I would like to talk with anyone who is familiar with this syndrome.

spikar · 06-06-2007, 06:35 PM

My son was diagnosed with PFAPA over a year ago. He started with very high fevers, and was at the doctor once a month for a year. Every time they told me it was a virus. I finally got fed up and took him to Duke Medical Center, where the infectious disease doctor there finally diagnosed him with PFAPA. He is given prednisolone every time he has a fever. I did some research and in a lot of the research they said that tonsilectomys were successful in more than eighty percent of children with PFAPA had shown no signs of it again. My son just had a tonsilectomy last thursday. They did a pathology report on the tonsils and it showed signs of Bacteroides. I am still looking all of this up, we just found out today. I will try to keep you posted as I get new info.,I am praying that this tonsilectomy works.

ts13 · 06-07-2007, 09:51 AM

wow! how old is your son?? i am anxious to see if the tonsillectomy works. my 2 yr old is experiencing the same thing. monthly high fevers with tonsilitis-always a virus as well. we started the prednisolone yesterday when i mentioned pfapa to the dr.
we have been battling this monthly for well over a year. how did they finally diagnose your son? any advice would be appreciated.

stephanie68 · 06-09-2007, 09:03 AM

Quote:

Originally Posted by spikar

My son was diagnosed with PFAPA over a year ago. He started with very high fevers, and was at the doctor once a month for a year. Every time they told me it was a virus. I finally got fed up and took him to Duke Medical Center, where the infectious disease doctor there finally diagnosed him with PFAPA. He is given prednisolone every time he has a fever. I did some research and in a lot of the research they said that tonsilectomys were successful in more than eighty percent of children with PFAPA had shown no signs of it again. My son just had a tonsilectomy last thursday. They did a pathology report on the tonsils and it showed signs of Bacteroides. I am still looking all of this up, we just found out today. I will try to keep you posted as I get new info.,I am praying that this tonsilectomy works.

stephanie68 · 06-09-2007, 09:12 AM

Hello,

After doing extensive research and many doctor's visits, I am 100% positive that my 5 year old daughter has periodic fever syndrome and a tonsillectomy will be the cure. She has had the same symptoms for about 1 1/2 years. It happens every 24 days. Symptoms include fever, vomitting, sore throat, tiredness, chills, no appetite, diarrhea, body aches. These bouts last between 2-3 days. Her doctor suggested she see a specialist and be put under to have a "scope" done. I wasn't thrilled with that idea. We are seeing an ear/nose/and throat doctor this Monday, June 11th. I am also praying that this will be the cure for her. SPIKAR...please keep me posted on your child's condition. I would love to continue corresponding with you. It sounds like we have been going through the same thing. How did you get the doctor to take out your child's tonsills? I am bringing tons of correspondence to our visit on Monday.