1. Kim H. on Scientists identify new treatment to combat PFAPA syndrome in children
    Kim H. Kim H. United States says:
    September 13, 2013 at 7:14 PM

    After missing 54 days of kindergarten and being sick every 3 weeks for months and months, our daughter was diagnosed with PFAPA when she was 6.  Under the guidance of doctors at Children's Memorial in Chicago, we spent a year treating the syndrome with Prednisone. We were unhappy with the unpredicatability of her 'episodes' as well as possiblity of giving her the Prednisone when the fever was not due to the PFAPA (ie:  fever due to an ear infection- pain arrived the day after the fever).  We decided to take out her tonsils and adnoids.  She did not have any other 'episodes' after that--HOORAY!    

    But..... now she is 18, and she is she has been getting sick frequently with high fever and swollen glands/lymphnodes.   Has anyone heard of this coming back after 11 years free of PFAPA illness/episodes?

    Reply
    • Barbara Castellano on Scientists identify new treatment to combat PFAPA syndrome in children
      Barbara Castellano Barbara Castellano United States says:
      March 13, 2014 at 8:23 PM

      My daughter had severe sore throats when younger, sometimes strep sometimes not. Began having more frequent episodes of high fevers, terrible sore throats about 1and ahalf yrs ago. She choose to get her tonsils removed August 2013. Has had at least four or five episodes of high fevers and severe sore throats lasting about 4-6 days since. Very frustrating. Her ENT is on board with the dx of PFAPA and I am also goin to take her to see an infectious disease dr.  Frustrating and discouraging. Not much you can do for your child when they are sick like this!

      Reply
    • My youngest started at age 6,(she is now 12) she missed 42 days of first
      Simone swantak Simone swantak United States says:
      October 19, 2016 at 11:29 AM

      My youngest started at age 6,(she is now 12) she missed 42 days of first grade.  The pediatricians were not familiar with PFAPA - she was diagnosed outside the practice by another doctor, so frustrating.  She too had tonsils and adenoids removed and cured the PFAPA, but experienced neurological issues such as a gait change and severe anxiety.  It has been a long journey.  

      My oldest has been experiencing the same episodes for 4 months now, the same pattern.  Her neck lymph glands become enlarged 2 days before the fever starts.  So very sick with night sweats, fever, sore glands for up to 6 days.  She is a freshman in college and is struggling.  Off to the Rheumatologist today - I am hoping progress has been made since 2010 other than prednisone treatments which only made the episodes come more frequent for my youngest.

      I am curious as to how it worked out with your daughter at age 18?

      Reply
The opinions expressed here are the views of the writer and do not necessarily reflect the views and opinions of News Medical.
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