A Sydenham’s Chorea Story


Sydenhams Chorea is the prototype disorder for PANDAS. If you or your child has chorea movements, it is important to get a correct diagnosis. One may have an easier time getting IVIG with an SC diagnosis rather than a PANDAS diagnosis. 

I was 9 when I got pans/pandas. I am now 71. It will be a struggle to write this as so much has changed. And got better as well.

I came down with rheumatic fever and then what they used to call Saint Vitus dance. Or in other words Sydenhams Chorea. My Father who was Welsh did not seem to think much was wrong. I can remember dragging myself out to sit in front of the television because at that point I could not walk and barely could sit up. He had my mother ask if I was lying or really sick. My most memorable moment but we are not here to psychoanalyze me.

There were a lot of kids sick that way and as they looked it over in the hospitals they came up with the Pandas thing. But what to do with those kids? We – my generation – got put into a hospital not far from my house where most of us went into isolation and I had a nurse I began to hate who had me write my name even though it was impossible.

Then I started going through everything from spinal types to awful sedatives that gave me horrible headaches. Metal bed pans that night nurses forgot and I would practice my coordination by kicking them out on the floor at night and waking up the pediatrics ward. I was I was in the hospital from before one Christmas and through the next Christmas. Then I was considered stable although still not walking to go home.

I clearly to this day can not forget when I finally realized things had changed for me forever. My relationships had changed forever. And I still have problems with that. School was a massive struggle and I often cried or became frustrated. I did graduate and right before they gave me my diploma I went to a meeting to decide if I was handicapped. I still had the tics, and lack of coordination. I could take an egg out of the fridge cups and drop it every time. I told the interviewer I did not feel handicapped. Of course not, as I could barely remember what normal was anyway. But I could write even though I had to have numbers in twos and they often moved around on their own.

I have been on restricted diets and I have also overeaten. I have had weird medical things happen and if I try to discuss PANDAS with my physician he draws a blank. The last COVID booster I had made me horribly sick and I do not remember walking home that day from work. PANDAS is real. I had not thought about it in years though until a young mother told me her son had it. The rush of memories was overwhelming. My only real treatment for PANDAS/SC was penicillin and sedatives but I survived and am now retired and working part-time. I would love to know if I can improve my health somehow. And I am willing to share my thoughts about my early years. (I even had a wooden wheelchair).

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