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My son mainly has Chorea/could this be PANDAS?


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Hello, I was wondering if my son could have PANDAS. This year his ENT diagnosed him with Spasmodic Dysphonia, which is what led us to the Neurologist. The Neurologist noticed he has a lot of Chorea type movements. I had never noticed it before but when the Dr. had him hold his hands out you could see his fingers moving like he was playing the piano. He also had the milkmaids grip. He got strep throat a lot last year but hasn't had it since then . He also had a lot of Anxiety over the summer . He had frequent recurring nightmares that I accidentally stole something and got arrested. He would constantly ask me all day if I would ever get arrested. He also stopped going to stores with me, including Target which used to be his favorite place. The last few months he hasn't had as much anxiety but still has the Chorea type movements. The movements are very mild and hard to notice unless his hands are held out. He also has Autism and has a lot of sensory issues. So far he has had blood work and an MRI. The blood work was normal so far , but he has to get more done soon. They said the MRI showed he has a slightly decreased size of his Cerebellum , but they said this is not what caused the Chorea. He has to see a Cardiologist , Ophthalmologist, and Genetic Dr. to rule out other causes, some of which are quite scary. I was just wondering if this sounds like PANDAS or if anyone knows what it could be? Thanks so much!

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I believe many children with PANS/PANDAS have the exact Chorea movements you speak of (milkmaid, and the hands out in front moving a bit with the eyes closed, there is also something they can test involving the tongue). My son has this too and is PANDAS. Apparently, this comes with the current thinking by doctors that PANS/PANDAS is a "forme fruste" of Sydenham's Chorea. Your son's other symptoms also sound very consistent with PANS/PANDAS. I am not sure where you live, but seems like it would be very good idea to get him to a PANS specialist... Best of luck. Sorry you are dealing with this.

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It certainly sounds like it to me.

Some of the other symptoms you describe are OCD in my opinion, even though it doesn't appear obvious (i.e. "constantly ask me all day if I would ever get arrested"). That and the anxiety plus chorea would qualify him for either PANDAS (since he had strep) or PANS. Check out the definitions here:

http://www.pandasnetwork.org/understanding-pandaspans/what-is-pandas/

Note that chorea qualifies as abnormal motor movements.

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