Hi - I apologize I did not see this response and am new to this forum- ( thought I would see an email notification if there was a response) -thank you for responding. We are still dealing with the Catatonic episodes- happening off and on daily. Also has many other symptoms- involuntary bladder spasms, rage episodes, weakness... Nobody seems to be able to help. His psychiatrist said he should be in long term in patient care- but I am hesitant because his illness began suddenly this year and he doesn’t have a true diagnosis. Also, his bilirubin is high and copper is off - so I don’t want to ignore a medical cause they may have been missed. Psychiatrist had her “Mentor” see him and he laughed and said he had only seen Catatonia 5 times in his career, and my son should be an actor. Very frustrating- Not to have the professional support - as I watch my son suffer daily. I am interested in the Tociluzumab- Glad it helped. Thanks again!
We are also dealing with catatonia as well involuntary movements, walking difficulties and much more. I know this is an old thread, but how is your ds and how did he recover? My ds is 20 and developed neurological type symptoms in March following Mono in January. Before this, he was a fairly typical college student- busy, social, active. Now his symptoms are so severe that he is loosing hope for a recovery. In addition, everytime he ends up in a hospital - they add a new psychiatric medication. Had IVIG in Aug. (did not improve), had numerous tests done ... no answers yet.. Thanks for forwarding any helpful tips.