GraceFull Posted June 24, 2016 Report Share Posted June 24, 2016 Hello, New to this forum and desperately trying to find a PANDAS specialist in Southern California for our 13.5 yr old son with PANDAS. We really need someone who understands treatment and can be very proactive. Our pediatrician was not well versed in treatment at all (and sadly Cedar Sinai can only test ASO titers to 800...they don't have the methodology to test higher so we have no idea of his initial score. Last tested he was at 918. We found an integrative MD who was willing to let us into her practice. She has helped with supplements, brain mapping (results: brain inflammation, wasn't getting REM sleep cycles, short term memory issues, anxiety... the neurofeedback helping calm some of the OCD issues and helping with focus issues and now sleeps and dreams (so REM sleep is finally back, although does have nightmares occasionally). She has him on 75mg of Lamictal and other supplements for anxiety. She won't try prednisone...wants us to find a specialist since PANDAS isn't her expertise since he is still suffering. He had Periodic Fever Syndrome as a Toddler (tonsils and adenoids removed at age 3.5), history of continued strep. Last pathogen was strep in sinus cavity...been strep free since mid may. Curious if there are any Doctors near Los Angeles or if any of the Doctors in Orange County are experts in treating kids with PANDAS. I will travel anywhere in California if need be to find the help for our son. Any suggestions or reviews would be most appreciated:-) Link to comment Share on other sites More sharing options...
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