Brads Mom, our stories are similar and I would love to contact you and talk. My son is also 17 with schizophrenic symptoms, a history of frequent streps, lyme, ear infections, and he had a strep-triggered PANDAS onset at the age of 10. He is currently in the COS study at NIH, and we are working on getting the COS team and Dr. Swedo's team to collaborate on his case. When we last saw Dr. L 10 months ago, she felt our son was a candidate for IV Rituximab, but at the time, Georgetown had not yet established the protocol for these treatments. I'm glad to know that Dr. L has put that in place. My son has severe OCD with delusions and completely debilitating auditory hallucinations, paces constantly, and has not been able to function outside of a hospital setting for over two years. He is a non responder to all antipsychotics including Clozaril (used as a last resort for treatment-resistant schizophrenia), so we plan to connect with Dr. L some time soon to look into the Rituximab option again. He does have a positive CamK, and in the past we have had partial success with IVIG and plasmapheresis.
Pow Pow has been a good resource for me, and I can connect you with others whose children have had IV Rituximab. I will message you with my contact info.
I have not posted on this forum for a very long time, but your story has really hit home for me. Best of luck at Gerogetown. I hope we can talk soon.
Ellen