Search the Community
Showing results for tags 'PANS OCD rages tics'.
The search index is currently processing. Current results may not be complete.
Found 1 result
-
hi all seasoned parents, we finally have an apt with Stanford PANS clinic after 8 month wait next week. Wondering if anyone that has gone there can share good or bad stories with me. My son has been in severe flair for almost two years now. The violent episodes happen almost hourly on the dot, tics severe, OCD, anxiety, panic attacks etc.... I have been to almost every westcoast and eastcoast doc out there in the last 10 years. some treatments help short tem but always falls back. we have lyme too and he has been through multitudes of lyme and coinfection treatments too. Nothing is helping, he continues to spiral downhill and we just cant live like this another day. wondering how long the apt is at Stanford, what to expect, trying to not get my hopes up but praying they will atleast investigate autoimmune piece since no docs have done much in that area. he did IVIG last nov, did one LD, 2 HD and each time he got more psychotic and tics insane, was horrible. no one can tell me why it made him so much worse.. antifungal treatments use to help but nothing is helping now, he has white tongue and roof of mouth and seems to be resistant to everything, anyone have any big antifungal treatments that have helped? so have tried to call Stanford for weeks to get them the huge amnt of paperwork they wanted us to fill out, and also find out how long the apt is etc, but not getting a return call. if anyone wants to share their experience with me I would so much appreciate it... deborah