My almost 6 year old son was diagnosed with PANDAS in October. His condition was triggered by strep. Our treatment protocol has included extended use of antibiotics (helpful), naproxen/ibuprofen (not helpful), and three courses of IVIG infusion therapy (helpful, but only temporarily). We are working with a rheumatologist and neurologist in Austin, TX. We have also been doing CBT with a therapist since October. My son continues to have issues and I am wondering if you anyone can provide any guidance as to what our next step should be. Every time he gets strep (and he gets it even while on low-dose preventative antibiotics!), he has a huge flare up of his OCD/tics. And his handwriting and executive function are getting worse. We have not seen a PANDAS "specialist" but rather are working with doctors here who know of the condition and have treated patients with it. They seem to be somewhat in the dark, however. I saw on the Pandas Network website that there are two doctors listed who parents recommend--Dr. Sesgagiri Rao and Dr. Shreenath Doctor. Does anyone have experience working with these docs? Good or bad?
Also, for those of you who have gone the IVIG route, how long did it take to see improvement? We see some improvement post-treatment but it never lasts.
Please respond if you can.