I hope I'm using this forum properly. If not, forgive me, this is my first replying/posting.
My 6 year old daughter, Jessica, participated in Dr. Cunningham's study. She also has elevated Anti-Lysogagnlioside and Anti-Tubulin levels, and her Cam Kinase II score is 179%.
We live in Ventura County, CA and we went to the Children's Hospital at UCLA yesterday. Even after being dismissed by doctors what were unaware of PANDAS, I was hopeful that an institution like UCLA would respect the findings of an insitution like OUHSC -- I was wrong. They weren't even willing to email consult with OUHSC! They wanted to give us the label of autism and send us on our way, but that doesn't explain her symptoms and I've been told she's not autistic.
They said they had limited experience with PANDAS and that the condition resolves on its own within a year. Although Jessica had sudden onset OCD, her other symptoms have been long term. I believe she got strep at 12 months and the sudden onset OCD was triggered by exposure to Hand, Foot and Mouth Disease.
How long has your son had PANDAS related symptoms?
I don't know where you're located, but I have found a few doctors that are willing to treat PANDAS. as follows:
Dr. Kenneth Bock in New York
Dr. Miroslav Kovacevic at the Loyola University Stritch School of Medicine in Hinsdale, IL
Dr. Daniel Geller at the Massachusetts General Hospital in Boston, and
Dr. Catherine Nicolaides in New Jersey.
I think my biggest obstacle is going to be the affordability of the treatment. With our experience at UCLA yesterday, it doesn't look like our insurnace is going to cover treatment.
