1. My son suffered from this syndrome starting at age 3, with a fever of
    ALICIA PEREZ ALICIA PEREZ United States says:
    April 12, 2013 at 6:19 PM

    My son suffered from this syndrome starting at age 3, with a fever of 105-106 and febrile seizure. He continued having the monthly high fever, exudative pharyngitis, cervical adenitis, sever chills, lasting usually 3-4 days, associated with abdominal discomfort and lack of appetite until age 6.
    Afterwards they occured less frequently then as a teenager he had similar episodes with stress or travel. As older child he had less adenitis and max fever 102-103, and had mouth sores. As an adult he has oral sores with stress, trauma and some foods. Problem was that he was born in 1980 and never had a diagnosis, I was blamed He missed a lot of school, and there was a lot of family disruption and sibling issues on account of his chronic illness. He was treated with phenobarbitol for one year to avoid the recurrence of seizures.
    His daughter started the same pattern, beginning at 12 months and has been referred to NIH at 19 months. I think there is still little awareness of PFAPA and it has been difficult to get her diagnosed despite my profession and experience.

    Reply
    • This sounds exactly like my daughter...
      Diane D Diane D United States says:
      January 24, 2016 at 7:34 PM

      This sounds exactly like what my daughter suffered from beginning at 7 months. She was born in 1979 and no one ever diagnosed her either. We always knew she was going to be sick every 4 weeks to the day and adjusted our family schedule to revolve around her illness. She was on Phenobarbital  for a year to prevent seizures, which fortunately she never had although her fevers ranged from 105-108. She also spent a year on Prednisone which didn't help. Although we went to St. Christophers  Hosptial in Philadelphia and AI Nemours in Wilmington, DE  for years, we never got a diagnosis. After missing  a lot of school (5-7 days a month), and spending once a month in the hospital because she would get so dehydrated, it was suggested that we have her tonsils and adenoids removed. She was in third grade and woke up like a  different child. Although she still had fevers, they were not as high and not every 4 weeks anymore.
      She is an adult now and still gets fevers, joint pain and sore throats often but not every month.
      I never heard of anyone else that had these symptoms until I looked them up recently and heard about PFAPA. It feels great to be able to finally put a name to this chronic illness.

      Reply
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