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PANDAS specialists


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I'm new to this forum, and am not sure what I'm doing... But I have been looking for a specialist to take our 8 year old son to. We live in upstate NY, and his pediatrician, as well as the therapist we've started taking him to, are unfamiliar with PANDAS. I've been 90% sure that's what he's got since he was 4 years old, but we haven't had any back up or sympathy, people here just look at us funny when we tell them. We've had a rough Summer with him, and I'm worried about how the school year is going to go if we don't get him treated by someone who understands and knows what they're doing. I'm having a hard time finding a good list of specialists. I did see Dr Trifiletti's info, and I emailed him. He was quick to respond, and could see Connor as early as this week, but it doesn't look like they work with our insurance. (Which is a pretty common one, Blue Cross Blue Shield...) I saw a thread on here that lists Doctors who work with PANDAS, but it looked like the last post on it was from 2009, so I was hoping there would be more options available now. Does anyone have any recommendations for good Doctors to work with in NY, PA, or NJ? We don't mind driving a few hours, it would be worth it if we could really help him!

Thanks!

Heidi

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I'm new to this forum, and am not sure what I'm doing... But I have been looking for a specialist to take our 8 year old son to. We live in upstate NY, and his pediatrician, as well as the therapist we've started taking him to, are unfamiliar with PANDAS. I've been 90% sure that's what he's got since he was 4 years old, but we haven't had any back up or sympathy, people here just look at us funny when we tell them. We've had a rough Summer with him, and I'm worried about how the school year is going to go if we don't get him treated by someone who understands and knows what they're doing. I'm having a hard time finding a good list of specialists. I did see Dr Trifiletti's info, and I emailed him. He was quick to respond, and could see Connor as early as this week, but it doesn't look like they work with our insurance. (Which is a pretty common one, Blue Cross Blue Shield...) I saw a thread on here that lists Doctors who work with PANDAS, but it looked like the last post on it was from 2009, so I was hoping there would be more options available now. Does anyone have any recommendations for good Doctors to work with in NY, PA, or NJ? We don't mind driving a few hours, it would be worth it if we could really help him!

Thanks!

Heidi

Since pandas is still considered "controversial" there's only a few true specialists who see large quantities of pandas kids. So very few take ins. I travelled cross country to see Dr B. and well worth it. Does a thorough work-up. Most the rest you pay up front and claim back some from ins. Good Drs too though. Or go to www.pandasfoundation.org and click on providers to see a state by state listing of Drs, although they might not be experts but can treat. Alot of DAN Drs are familiar with pandas as alot of kids with autism have pandas too, but usually they do not take ins also. I think Dr Bs your best bet, he does have a 2-3mt wait. Good luck.

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