Re: New Member - Northern California

[Guest guest]

Who is your current pediatrician? I lived in Clearlake and finally found Dr.

Mann. He came to Lakeport a few days a week but also works out of Ukiah. He

had a previous patient with FMF and was very open to what I had to say about

Tyler's fevers. Our other pediatrician kept telling us viruses even though he

was fevering every 2 weeks and never had symptoms or results needing

antibiotics. His office was able to coordinate DNA testing with our insurance

and we did it out of his office. If you are interested I can try to find the

old address and phone info for you. He referred us to UCSF and we saw a

Rheumatologist there. She prescribed naproxen for him. It has helped drop his

fevers from 105-106 to 102-103 and he is eating better during them. Anyway I

know where you are at and it is difficult. All I can say is to continue to be

an advocate for your child. I really had to push and say, " Hey, something is

not right here! " in order to get any kind of answers, that

meant finding a new doctor and pushing for DNA testing. We aren't goint the

prednisone route, I don't want to introduce steroids to him....and because he

fevers so often I don't want the pred to make them any closer than they already

are - I would be giving it to him all the time. Keep us updated. If you want

MD info let me know, or you may just mention it to your current doc if you like

him/her that Dr. Mann is knowledgeable and they can communicate with eachother.

He is a really great Doctor!

Pruden

Tyler 2.5yrs (fevering since 3 months - undetermined PFS)

Dylan 2 months old

Vancouver WA