Has Anyone with PANDAS Kiddos seen these Docs

[MarcyJ]

Hello,

 

My son has been diagnosed with PANDAS we do have a PANDAS doctor who we are NOT looking to leave but need a second opinion from an expert for our son is a tough case with very high titers. We greatly respect our doctor and he has a great care rate but none of his patients are as sick as our son. He went 5 years misdiagnosed and mistreated on several horrible psych medications so his recovery is set back.

 

Anyone seen

Dr. Elizabeth Tapas- Newton Wellesley Hospital Immunologist. She has a 4-6 month waiting list I have heard but will wait if she is good and has good results with PANDAS kids. Our son has very high strep titers that are not going down with antibiotics alone in 8 months. Our current doctor willing to work with another doctor to get our son better.

 

We have appointment with Dr. Trifinetti in Jan in NJ

we have appointment with Dr. Bock in Dec in NY (yes I know he is in MA but easier to get appointment if you go out of state.

 

Have consulted with Geller - he was great and spoke to me over the phone- only taking private patients not through MGH. It's fine we are willing to pay out of pocket for the right doctor. It is worth it I think to see Geller for he is the best and at least all labs will be covered through insurance even if appointments/consultations are not.

 

Really don't want to go the IVIG route and avoid as much as possible.

 

Any help/suggestions/feedback on experiences appreciated.

 

Thanks so much!

 

 

 

[Sethsmom]

Marcy,

We see Dr. Williams out of Mgh in his private practice. We are on a waiting list for Dr. Sharf, a neurologist at Mgh. We have an appointment with Dr. Trifelleti as a second opinion as well next week. I am interested in Dr. Gellar as I had read about him and think hes heading the T force geeen study out of Mgh. Our son was accepted into this study out of the Nashua site. I wish I could tell you more about any of the doctors you mentioned but we are in the same boat with trying to tease out the best alternative for a second opinion. We like Dr. Williams but as you say our son is in a situation that he has not really seen. We are on the fence about kerping the Dr. Trifelleti appointment as there are mixed reviews and we have been to so many doctors our son is burned out, a 4 hour trip to get there is dissuading us. Do you live in Mass? If I get more info I will pass it on. If you do please let me know as well. Good luck with your son, I understand the challenges of trying everything to help what feels like an impossible situation. Wishing you much luck in your search!

Darcie

[NancyD]

Yes re Bock and TePas. Love them both. Was with Bock for 13+ years and went to TePas several times. PM me for specifics.

[Guest]

Marcy,

We see Dr. Williams out of Mgh in his private practice. We are on a waiting list for Dr. Sharf, a neurologist at Mgh. We have an appointment with Dr. Trifelleti as a second opinion as well next week. I am interested in Dr. Gellar as I had read about him and think hes heading the T force geeen study out of Mgh. Our son was accepted into this study out of the Nashua site. I wish I could tell you more about any of the doctors you mentioned but we are in the same boat with trying to tease out the best alternative for a second opinion. We like Dr. Williams but as you say our son is in a situation that he has not really seen. We are on the fence about kerping the Dr. Trifelleti appointment as there are mixed reviews and we have been to so many doctors our son is burned out, a 4 hour trip to get there is dissuading us. Do you live in Mass? If I get more info I will pass it on. If you do please let me know as well. Good luck with your son, I understand the challenges of trying everything to help what feels like an impossible situation. Wishing you much luck in your search!

Darcie

Sethsmom, can you tell me your thoughts on Dr. Williams? We don't know exactly what's going on with our daughter, but we are thinking we need to investigate the possibility of PANDAS more. I was referred by another mom to an infectious disease doctor at MGH. But, they would not let me make an appointment with him and said we need to see Dr. Williams first.