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Posts: 1
Joined: Sep 24, 2011

PFAPA and/or FMF

Posted by @jamurzyn, Sep 24, 2011

Anybody have any experience with either PFAPA or FMF? My 4 year old was diagnosed with PFAPA 3 weeks ago and her genetic testing came back showing 1 mutation in a gene most commonly found in FMF. I have 2 different diagnoses from 2 different specialists. So confused and want the best for my daughter. I try very hard to educated myself on bothe diseases but bottom line is I am just the mom not the doctor!



Posts: 1
Joined: Nov 20, 2011
Posted by @finefam, Nov 20, 2011

I am pretty sure my 28 month old son may have PFAPA. It is something we have been dealing with undiagnosed since he was about 6 months old. I have done my own research to find what could be wrong, after several blood test, chest x-rays, UA’s, etc…With Doctors chocking it up to a ‘virus’. He has all the symptoms of PFAPA, our doctor would like is to see an Allergist, then move on to Infectious Disease. Its a very stressful syndrome since it is such a Mystery, and has been difficult on our family, as it is so difficult to see him like this nearly each month, and to deal with as working parents. Where are you at in your process?

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