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Old 02-05-2009, 05:38 AM   #3
Junior Member
Join Date: Jan 2009
Location: NY
Posts: 10
lotusseeds HB User
Re: Who has used steriods with PFAPA?

My son was actualy diagnosed with the syndrome called PFAPA by a specialist , there are several threads on this very syndrome.

It is Aphthous Stomatitis, Pharyngitis, and Adenopathy. I have had my child tested for a host of other diseases including Mono and Lyme. Lyme is really prevelent in our area, you are correect. My husband had it last year. We have weighed all of the factors and we believe that given the severity, frequency and duration of his episodes every single month, every 22 days, it is in his best interest to have his tonsils and adenoids removed to prevent further episodes. The data shows about a 90% "cure" rate. A lot of doctors prescribe on dose steroids to prevent an episode, if surgery is not given. The syndrome occurs again, most often within weeks. I was considering asking the speciaist if he would consider dosing him if he was having an episode days before the surgery which is unfortunately scheduled during one of his episode due dates.
Thak you for your differnt view of the issue, I appreciate it.

Last edited by moderator2; 02-05-2009 at 09:06 AM. Reason: posted disallowed website(s)