Updated info on PANS/PANDAS clinicians
Hi. I checked out prior posts on this topic, and it has been years since the last recommendations.
Looking for recommendations of clinicians that diagnose and treat PANDAS. Thank you!
Nov 28, 2023
Hi. I checked out prior posts on this topic, and it has been years since the last recommendations.
Looking for recommendations of clinicians that diagnose and treat PANDAS. Thank you!
Parent Replies
Please check out the Immune Behavioral Health clinic at Stanford. We've been working with them for years--and my son is finally in remission thanks to their diligence. https://www.stanfordchildrens.org/en/service/pans-pandas
There is a Pans/Pandas clinic at Stanford. Dr Kiki Chang who was the founder/or lead psychiatrist at Stanford is in private practice. Dr Cantwell in San Francisco is a holistic doc who treats Pans/Pandas. The gold standard for kids with acute Pans symptoms is IVIG treatment monthly which if indicated, some doctors can get approved by insurance for at least six months, sometimes 9-12 months or longer.
Hi, I'm sorry you're going through this, it can be tricky getting care. There's a list of practitioners on the Pandas Network website https://pandasnetwork.org/understanding-pandas/
Some of the clinicians are no longer treating Pans/Pandas/AE, but there's a list and a place to start. Stanford doesn't accept our insurance so we cobbled together providers straddling the medical docs and the behavioral people. The medicine won out for us. IVIG was a big help, but OCD is a difficult condition and you should become educated on that. We joined some support groups and IOCF https://iocdf.org/ and got a lot of good information.
On a different note, if your child also has POTS and/or chronic fatigue from this, we got some good info from DynaKids (dysautonomia) https://www.dynainc.org/ and we used that to help with school.
Good luck. Also, maybe we can start our own Bay Area family group.