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Doctors we have seen who helped with PANDAS


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We just travelled from Seattle area to Hinsdale IL to consult with Dr. Kovacevic and the had IVIG treatment. He is nothing short of amazing. I highly recommend traveling to see him. The travel and treatment are expensive but my son was in excellent hands, and Dr K expects that he will have a 90% or greater resolution of symptoms within 3 months. Good luck.

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We live in southern middle Tennessee, and are in the beginning phases of possibly getting a PANS dx. We had the Cunningham Panel which showed elevated CaM Kinase (137), and was border- line on the Anti-Tubulin,   1:1,000.   Does anyone know how these values correlate in terms of Dx or treatment if any? Also if there are any good knowledgeable PANS Dr's in the southeast. We are not too far from Vanderbilt Children's hospital. Feeling desperate and overwhelmed....My dtr is 15 and we are just barely getting by.😔

 

 

 

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Hi-  I'm new here and looking for a doctor that is close to Virginia Beach, VA.  My son does not yet have a diagnosis, but I am almost certain that PANDAS is what has been going on with him for the past six years after reading about it.  I suspected this earlier in the year, but now, low and behold after his three siblings contracted strep throat (a week apart from each other so it's literally been in the house for almost a month), he's having crazy flare ups of his tics, anger, anxiety, and even his math grades have started to drop.  Any insight to a doctor would be great.  I have an appointment to discuss with his Pediatrician on Friday, and she's typically quite receptive.  Thanks!

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On 3/19/2018 at 10:23 AM, amychris03 said:

Hi-  I'm new here and looking for a doctor that is close to Virginia Beach, VA.  My son does not yet have a diagnosis, but I am almost certain that PANDAS is what has been going on with him for the past six years after reading about it.  I suspected this earlier in the year, but now, low and behold after his three siblings contracted strep throat (a week apart from each other so it's literally been in the house for almost a month), he's having crazy flare ups of his tics, anger, anxiety, and even his math grades have started to drop.  Any insight to a doctor would be great.  I have an appointment to discuss with his Pediatrician on Friday, and she's typically quite receptive.  Thanks!

Richmond, VA —

Dr. Wei Zhao at VCU. Takes insurance. Communication sometimes slow but orders ivig and plasmapheresis depending on case. Changed our lives. 

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Dr. Roy Steinbock at Mindful Family Medicine (Boulder, CO). Treats PANDAS/PANS/BGE. This man saved my life. I ended up having viral encephalitis, not PANDAS, but this man will dig into your case and do the research to make sure you get the care you need. The best doctor I've ever worked with. Caring, takes the time to listen, and extremely knowledgeable. 

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