Beenthere, your story gave me chills. I have a 27 year old son who has been in and out of Pandas since elementary school, but the first severe episode was 7th grade. (This is all hindsight, as he was not diagnosed until high school.) He is now in a very severe flare and has been for a couple of years. He is begging for help. He saw Dr B in Connecticut several years ago, occasionally sees a very informed allergist/immunologist a few hours away (who gives no meds, just supplements) and now sees a very sympathetic family doctor in our own city (who has him on Azithromycin and Augmentin.) My son has to go off the antibiotics often, because of all of the diarrhea they cause. He is desperate, and I don't know what the next steps are. His sister also had a couple of severe PANDAS episodes, but does quite well now. She also had 3 bouts of what is now believed to be rheumatic fever, in which she was sick for months each time. She is also in her 20's. She had an EXTREMELY severe reaction to IVIG several years ago , so we never again did another one, and are hesitant to recommend IVIG to our son for that reason. He is feeling out of answers. (By the way, while our daughter had positive strep swabs, our son never did. A couple of the doctors said it is probably in his sinuses or gut. He had sinus infections constantly as a child. Still does.)
We could certainly use some advice and hope.