Who treats PANDAS?

[PJette]

We've just found out about PANDAS. My niece is OCD, and has a long history with strep.

Her mother is trying to find a doctor (who will listen) and run the appropriate tests.

The pediatricians she's tried so far are clueless. Should she try an immunologist? Or other specialist, the pediatricians do not seem to be up on it.

How do you find a doc that will help with PANDAS?

 

Also, I read that the treatment for PANDAS is an IV infusion of a product that is a blood derivitive. Is that true, and if so, are there any alternatives?

 

Please, anyone who can inform us as to where to turn will be greatly appreciated. My niece is suffering so badly, and so is her family.

 

Thanx,

PJette

[Chemar]

I am not a PANDAS parent so dont have answers to all your questions but here is a thread that may answer some questions for you till more of our PANDAS parents can answer specifics

 

http://www.latitudes.org/forums/index.php?showtopic=1053

 

prophylactic antibiotic treatment seems to be the first line of treatment (many have had success with zithromax/azithromycin)

 

finding physicians who are aware and willing to order the correct blood tests is challenging but more are thankfully becoming aware

 

there are some considered experts...Dr Susan Swedo at NIMH in Maryland, Dr Tanya Murphy in Florida amongst others.