Plasma pheresis

[dcmom]

My girls both had plasma pheresis done at Georgetown University this year. Are they really the only hospital doing pex for pandas?

 

Has anyone had (or heard of) pex being done for pandas anywhere else (in the us)? And if so, do you know the treating doc?

 

thanks.

[JAG10]

The first doc that pointed us in the PANDAS direction for my dd10 was Dr. Josephine Elia at CHOP (PA). When she discussed possible treatment options, there were two that were opposite ends of the spectrum:

 

-Very conservative, short course of Amoxicillan

-plasmapheresis

 

She described plasmapheresis as the course for very severe (hospitalization or anorexia) cases that were very acute onset (like within weeks-couple months.) Ironically, it takes you at least 8-12 months to get an appointment with her at CHOP, so I'm not really sure how that works without some kind of inside baseball going on.

 

FYI-Elia is a psychiatrist

[T_Mom]

Yes, there was a neurologist at Children's Hospital who was originally recommended to us (now moved to CA) who had treated PANDAS children with pheresis. I believe there are quite a few treating but for a variety of reasons, under the radar, or treating it quietly--We will never know all the cases.

 

Thanks to the nay-sayers this has become threatening--and I think it is only the courageous doctors who are willing to help.

 

Thank you Sue Swedo for putting this on the map.