's visit to rheumi today :)

[Guest guest]

Today is a great day for us! I have finally been to a

doctor who says it is not viral. Dr. Sheets is

affiliated with Children's Hospital San Diego and

UCSD. His colleague is Dr. Hal Hoffman. He is one of

the researchers responsible for finding the gene

related to Muckle Wells (cryopyrin). Dr. Sheets got

an appointment with Dr. Hoffman on February

24, 2006 in San diego. Dr. Sheets said that he would

love to see in the study at NIH as well. He

says it looks like but we are

Irish/Dutch/German/English so he wants to rule out

TRAPS and the other Familial fevers.

The systemic JRA diagnosis is out the window. While

his symptoms presented like it in 2003 nothing now

suggests it. He also never developed arthritis.

Dr. Sheets prescribed 3cc's Tagamet 2X daily and one

dose of Prelone if he gets a breakthrough fever. He

goes back to Dr. Sheets in March and will see Dr.

Hoffman at the end of February.

I don't respond to all the posts but I want you all to

know that I read every single one of them. Now that it

looks like this is what has you will probably

hear from me more. Thanks for listening,

Mom to , 3 years old

fevers every 22-46 days (36 on average)

Southern California

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