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I have a son who I believe fits the criteria for PANDAs. We are experiencing a lot of the issues I am hearing being described. I have done a lot of reading on the internet, but not sure who to go to for help. Does anyone know of a provider in NC which is experienced with PANDA kids. I am in Charlotte, but willing to travel. Thanks in advance.

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A the top of the forum are pinned discussions and among them is a topic called "doctors who've helped us." You can check there for someone in your area. I know there've been others from your area. You may also want to browse all the pinned topics. There's a wealth of information there.

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I live in Charlotte and have just started taking dd to Dr. Mauve O'Conner. I found her on the Saving Sammy website. She is really an allergist/immunologist but works with PANDAS 2 days a week. We have only seen her twice now, the first time for the blood work, and then for our results. She tested for everything including lyme.

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Hi - I run the Carolinas PANDAS Parents Support group. If you are not already a member, please join us and you may find some further resources. Link below. There are 2 docs in Charlotte: Dr. Corbier: http://www.neurologywellness.com/ and Dr. O'Connor https://www.facebook.com/OConnorAllergy. You are welcome to PM me directly for further info. -Kath :)

 

Carolinas PANDAS Parents Support: https://www.facebook.com/groups/196042083811437/

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We are in Raleigh, NC. We've seen Dr Corbier and Dr O'Connor. Our best go-to PANDAS doc is Dr Latimer in Bethesda, MD. Very knowledgeable, compassionate doctor. We just saw her last Friday. We are presently trying to get an appointment at Duke with pediatric rheumatology, autoimmune encephalitis doctors. Our DS15 has had PANDAS / PANS for 4.5 years now and Dr L says he is "stuck" with his symptoms, and ordered additional blood tests and referred us to Duke...but as stated, they do not recognize PANDAS, so we will not be using this acronym with them. Unfortunately, you will find the PANDAS diagnosis to be controversial, but don't let this deter you getting treatment if this is what your child has. If you see Dr L, she will probably first order the Cunningham test from Moleculera labs.

 

http://www.moleculera.com/

 

Be prepared to pay out of pocket for some of the testing and Dr visits.

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Gallentine and Van Meter at Duke are treating "autoimmune encephalitis", P'S construct fits within that category.

 

They advocate a thorough bloodwork up.

Treating typically with monthly IVIG, first dose stronger then the others. Medications as needed.

They are taking an open approach to looking at the causes and outcomes of AE.

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