MarcyJ Posted November 14, 2016 Report Share Posted November 14, 2016 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! Link to comment Share on other sites More sharing options...
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