PANDAS MD near New York

[JWM]

I live in Upstate NY and am quite new to this PANDAS thing. We are looking for a doctor to treat our 9 year old daughter who is having her first episode of PANDAS.

 

So far I have found:

Dr. Kenneth Bock in Red Hook, NY

Dr. Susan Schulman in Brooklyn NY

Dr. Elizabeth Latimer in Washington DC

 

Does anybody have any ties/information about any of these doctors to help us decide which path to follow.

 

Thanks for any replies!!!

[emst]

Go with Drs O'Hara and Szakacs in Wilton CT -- just a little bit further drive. they are among the best in the country with these kids, hands down. Dr O'Hara likes Dr Bock, you could start with him if things are urgent and he has openings and then switch. Sometimes the wait for O'Hara and Szakacs is pretty long -- make an appointment anyway you wont regret it.

[bws1565]

We used Dr. Schulman before my DDs dx was corrected to Lyme/bart. She is an excellent pediatrician who is very open to Pandas, not a specialist. She does not accept new patients in the community, but does do consultations for Pandas children. She usually starts with Zithromax for a very long time, and moving onto IVIG if necessary.

[JWM]

We have an appointment with Dr. S in Brooklyn next week. We are really looking forward to it. She passed along her antibiotic protocol so that our school PA could continue treating our daughter until we could get to our appt with her.

 

She also ordered a bunch of additional labs that will be ready to discuss when we are there (which is much better than ordering when we are there and then need to come back or call to discuss). I haven't met this doctor yet and I'm already pleased.

 

I also have my girl on the waiting list at Mass General, but when I was on the phone with them this past week they said they no longer do IVIG. So we'll see. I'm also on the waiting list for Bock Integrative. I figured it wouldn't hurt.

[babsmom]

Dr. Schulman is fantastic. You won't regret meeting her. She hasn't treated us but we had a consult with her and were very impressed. Do you have the list of bloodwork she requests? I'd love to see it.

[argamas]

JWM - How long is the wait list for Dr. Bock?

[JWM]

babsmom

 

CBC

CMP

ASO

Anti Dnase

Lyme with western blot

Mycoplasma Pneumonia IgG IgM

Total Serum IgA

Vit D

[JWM]

argamas

 

it was about 3 months when I checked.

[WorriedDADNMOM]

I would say Schulman videos about zithromax extended use and then tapering were quite helpful.

 

Ohara also.....tons of good info to start with.

 

We use a Leading Doc in Columbus,OH area and have been very happy.

 

Any doc worth their weight in gold for pandas or pans will have a long wait.