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Anyone with tic-only Pandas symptoms?


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My daughter's symptoms were almost exclusively tics, but they never seemed to be able to decide whether they were "oscillatory tics" or chorea.

 

Ultimately, she was diagnosed with both Pandas and Sydenham's. The Cunningham test showed Pandas. It was a long hard road, and we tried just about everything. (Antibiotics, steroids, valium, Depakote, Tegretol, and tonsillectomies on both kids. ) The Depakote and Tegretol were essentially useless, but a few times there was noticeable and pretty much remarkable improvement with the abx combined with a prednisone burst, which worked, until it didn't.

 

The thing that ultimately worked for us was plasmapharesis.

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My son also only exhibits tics. His vocal tics range from coughing to squealing to full on screaming when it's really bad. Thankfully, the screaming only occurs during flares and usually when he gets home from school, tired and hungry, and at night, just before bed, when he is really tired. He has "typical" motor tics such as repetitive frowning, scrunching his nose and crossing his eyes. When his symptoms first showed up, he would twitch his arms and/or legs close to his body. However, in mid Jan and mid Feb, we experienced two flares and his movements because very large, like windmilling his arms, punching, kicking, grabbing onto something and yanking, leaping/jumping. This would last anywhere from 2 to 20 seconds. This kind of movement, which resembles a bizarre interpretive dance, leads me to suspect he might have Sydenham's chorea as well.

 

He has been on amoxicillin since the beginning, with the exception of a week long period where his tics came back full force and I fought to have the abx prescribed again. This was when our doctor didn't fully understand PANDAS. We see a neurologist also, but she doesn't seem to believe in the abx. She prescribed clonidine for the tics, which DS took for a two months with little effect. We will be seeing an immunologist in early April, so hopefully we can come up with a plan that will satisfy me. :D

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