Doctor Recommendations

[Bigal]

My son was recently diagnosed with tourette's. I want to make sure that it is not PANDAS though. I have received the names of two Neurologists from the PANDA network. Dr. Rosario Trifiletti in Ramsey, NJ and Denis Bouboulis, MD in Darien, CT.

 

Does anybody have experience with either of them? Or do you have any other recommendation for someone who lives in Western Massachusetts?

 

Thanks

Alan

[tpotter]

Dr. Bouboulis ( is not a neurologist. He is an immunologist, and has a very good reputation from others who have used him (we haven't.) I have had experience with Dr. T, and although he is really very smart, we have had a major problem with him, one of which was being unable to get hold of him at all afterwards, and my son went for months with no tx (I understand others are having some problems with the same thing.) Personally, I prefer Dr. Latimer in the Washington, DC area, and Dr. Kovacevic (in Chicago). Dr. L. is a ped. neurologist and Dr. K. is a general pediatrician, who has been working with PANDAS longer than just about anyone else we know. But, as I mentioned, Dr. B. has a very good reputation. You may want to confirm for PANDAS by sending away for blood testing from Dr. Cunningham in Oklahoma City (BTW everyone reading this...I just checked with her assistant after the tornado, and they're fine.) She is doing research on a test that shows how blood from a child with presumably PANDAS (it's still in research) interacts with CamKinase (a protein) in the brain. It's believed to be quite definitive. If you look at the beginning of the forum (top, above the line,) there is a list of all the drs. who have been identfied by other parents. Dr. C. is on the list with contact info. Good luck with this. It does get pretty daunting.

 

Good luck, and keep us posted.

 

 

 

 

My son was recently diagnosed with tourette's. I want to make sure that it is not PANDAS though. I have received the names of two Neurologists from the PANDA network. Dr. Rosario Trifiletti in Ramsey, NJ and Denis Bouboulis, MD in Darien, CT.

 

Does anybody have experience with either of them? Or do you have any other recommendation for someone who lives in Western Massachusetts?

 

Thanks

Alan

[thereishope]

Here is list of doctors that parents have compiled. Now they are not all PANDAS specialists,but have helped someone.

 

Doctors by State

http://www.latitudes.org/forums/index.php?showtopic=6428

 

 

These are the docs, the parents on here consider specialiats

Dr B - Dr Bouboulis

Dr K - Dr. Kovacevic

Dr L - Dr Latimer

Dr T - Dr Triffileti

Edited May 11, 2010 by Vickie