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I need recommendations for PANDAS docs in the NE and specifically Boston for a friend who's 24 yo son has PANDAS. I've given the usual suspects Dr L, B and T. Not sure if they all see adults and she needs some primary care suggestions. If there are others than the 'big three' in the East that you can recommend, I'd love to pass that info on. I've recommended she attend the conference too.

 

She's realized her son has PANDAS recently. He's a college grad, super smart and had a great job and PANDAs has reared its ugly head. After I suggested this is not his first episode, she thought back through the years and sees he's had it since childhood. Apparently, it wasn't too, too bad back then but its having a major impact now.

 

Thanks.

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I know Mass General sees PANDAS cases. I have heard they are even going to open a PANDAS clinic this fall.

 

But, if Lyme is a possibility, do not expect much help there (Dr. Steere who is a big chronic Lyme naysayer is there). Otherwise I have heard of people getting good treatment for PANDAS there, including IVIG.

 

Maybe someone with more first hand knowledge will chime in (and also which doctors to see). :)

 

PS It looks like Dr. Kyle Williams is going to head up the PANDAS/PANS clinic at Mass General. He is at the bottom of this list of speakers for the NE PANDAS conference http://nepandasparents.com/aboutspeakers.html

 

I think attending the NE PANDAS conference would be a great idea for your friend! Not sure if the 24 year old son is in shape to attend as well?

Edited by EAMom
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  • 2 weeks later...

I am in MA and have seen many docs in Boston. You can pm me if you would like but we see all pediatricians and I'm not sure they would see a 24 year old adult. I agree that going to the PANDAS conference is a must.

 

Regarding the PANDAS clinic they are opening up... It is very hard to get into. You must see one of their psychiatrists to get in, but either they are not taking new patients OR you have to get your primary care from MGH in order to get to see one. I am making my way through the system but it hasn't been easy.

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