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GraceFull

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Everything posted by GraceFull

  1. Thank you...Always good to have the name of a great integrative Dr:-), please Pm me. We did find one of the Northern California Dr's had moved to a practice in Temecula, so we have been seeing Dr. R (assuming forums don't allow us to say full names).
  2. Thank you! I'm so new, that I don't know how to private message. Just did a full battery of tests (largest yet). He tested negative for lyme (and never had a tick bite that we know of). His titers now at 786 (was higher) and antiD was positive. He is in week two of steroid taper...very rough first week! Showing huge transformation in behavior thankfully (also weaning of lamictal and just started low 1mg does of ambilify, so not sure if that is helping as well...was so bad didn't want to spread out treatment) AND on Augmenting/Clav because I got strep last week from a co-worker so maybe it's the trifecta of medicines;-). Now we are dealing with just mild OCD, still significant sensory (taste issues but hungrier from meds), night time separation anxiety, general anxiety, decline in math better but still there, just starting drawing again which is hopeful, adhd/short term memory still an issue, dilated pupils less often but still apparent even in broad daylight. Praying raging and major defiant/oppositional behavior is gone (again, as of yesterday). Just tested positive for staph infection in sinuses (on to new antibiotics starting today since staph is unresponsive to Aug/Clav, needs Cephalexin, poor boy!). Anyway...any suggestions for PANDAS/PANS MD in Northern Cali would be awesome. We live in L.A. so if there are any other members who can suggest someone closer that would be great too. Thank you so much!
  3. 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:-)
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