Hashimotos Encephalopathy with Chorea

@kaybeecda Welcome to Mayo Clinic Connect. I’m so glad you found this site.
Is your son currently receiving treatment? And how is he doing?

Hello @kaybeecda, I did find one member who mentioned her 10 year old daughter who hospitalized for Sydenham Chorea but I'm not sure they are still following Connect. Here is the post by @alishanjosh - https://connect.mayoclinic.org/comment/253140/. Hopefully they see this email notification and can share their experience with you.

I did find some research information that might be helpful for understanding the condition and possible treatments:
--- Chorea: An unusual manifestation of endocrine diseases: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10020596/

Thank you! I will check out the link. Appreciate the response!

Thank you so much. I would sure appreciate it if you could give us some direction. He lives in the Phoenix area and has had three, one gram doses of steroids that were administered over three consecutive days and then tapering off steroids for one week. So far there has been no change in his involuntary movements or stuttering. At this point there is no other treatment scheduled. Would appreciate any guidance you can give.

@kaybeecda I know you would like answers, but I’m not a doctor, so I can’t offer any. If you can go to Phoenix, I would do so. That way you can nicely confront doctors and ask questions. The articles that @johnbishop posted are good and you could maybe come up with some good questions. The doctors may say that they are in a ‘’wait and see” mode. Diagnosis of Hashimoto’s thyroiditis encephalopathy can be hard to diagnose, thus the ‘wait and see.’ You can find the patient representative when you get there (or you can talk on the phone). A patient representative is employed by the hospital but works for the patient. They can speak with the doctors, on your behalf, or even set up meetings for you.
The more you can educate yourself on the disease, the better you will understand the doctors.
Is your son in a community-based hospital or a university/comprehensive medical center? It may be possible to ask to have him moved (but it’s a long shot) so ask!
I hope this helps, even a little. I’m so sorry this has happened. What do you think you can do next?