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Showing content with the highest reputation on 11/23/2017 in all areas

  1. Magilu, my child has presented very, very similarly to the original poster. Please let me know how I can help: Strep triggered autoimmune encephalitis is the umbrella diagnosis - informally PANDAS. Sub diagnoses include Sydenham's chorea, catatonia, OCD, etc. My daughter had a most severe case including TWO years of catatonia - sometimes even waxy catatonia. Her treatments included IVIG monthly, 6 mos rituximab (failed), 9 mos cytoxan (failed), finally after five years sucess and almost full remission with tociluzimab. Her catatonia also involved anorexia, bed wetting, and even raging at times. I know that each of our kids presents differently, but I do have a lot of experience with catatonic symptoms. For two years she was either in bed or slumped over in a chair. I had to bathe her and at times even get her to the bathroom. It was devastating, but the good news is that she came back from a vitually vegetative state and starting college in January. Meds (at different times) to address the catatonia was primarily Ativan (lorazepam) and risperidone. She improved slowly on these meds but it was the tociluzimab that brought her back to near normal after five years of all the symptoms your child had (and more) including high DNase titers, etc. If my child improved, you have every reason to belive your child will too! See my recent update post for more details on her recovery. You are more than welcome to PM me.
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