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!