and Sioux Falls area or surrounding states

[Guest guest]

,

Hello, good to hear from you.

It is quite difficult to advise... All I can say is networking here to find a

local doctor who IS familiar is what you need to do.

You may just need to travel to another area... When I was in Florida I had to

either travel a few hours to St. Pete's or travel northwest to Gainesville which

was about 4.5 hrs.... to get a really good specialist who was VERY familiar with

ALL the Periodic Fever Syndromes. I still decided later to join the study at the

National Institute of Health in Bethesda and we continue to travel there once or

twice a year...

Finding a larger Children's Hospital where you can see a doctor who is familiar

with the various PFSs as well as other disorders is the best solution...

Hopefully someone from your area or the surrounding states can assist here...

I would definitely want more answers.

God Bless

Fran

Fran Bulone RN

Mom to ph 7yr CIAS1 mutation 11/05

Waxhaw NC

/