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Found 2 results

  1. Hi everyone, I am almost 25 and just got diagnosed with PANDAS a couple months ago. When I was six, I had Sydenham’s chorea and was put on prophylactic penicillin, which I continued taking until age 22. For the past few years I have been having increasingly bad symptoms and finally just found out that I have also had PANDAS the entire time. I also scored very high on the Cunningham Panel. Unfortunately, IV steroids made me worse, and the treatment recommended to me is rituximab, which I do not want to do. I feel like I need to figure out the root cause of why I am having an autoimmune problem.
  2. We finally saw a top neurologist yesterday. He said my ds did not have PANDAS because his dnase titers where not high enough. I KNOW from everything I have read that he can still have PANDAS without elevated titers. My son has every PANDAS symptom except OCD and urinary issues. The doc did confirm he has chorea so I think he fits the PANDAS criteria. It is my understanding that he has to have OCD and or tics/choreiform movements plus some of the other long list of symptoms, but I have not read about any other patients who do not have OCD. Are there any of you out there? My ds does
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