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Choreiform movements


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We had a phone consult with Dr T who said our DS was textbook PANDAS. Unfortunately, I think we could also have narcolepsy in the picture as well. Every so often DS has 'odd' facial expressions, often on exertion. It is mainly confined to his face, particularly his mouth. It is like a grimace or tightening of his mouth muscles. Sometimes he holds his hand a bit 'odd' where it looks like his fingers overlap. This is most likely seen if he is tired and exerting himself or concentrating on a physical activity. I am trying to distinguish this from cataplexy. Cataplexy is a symptom of narcolepsy where muscle control is lost in response to a strong emotional trigger.

 

I am unsure how facial choreiform presents itself in PANDAS. Hascanyone experienced this? If so, what does it look like? Are there any specific triggers and how long does it last for? Is it intermittent or constant?

 

I know this board is not about narcolepsy and its symptoms but I'd be very grateful for any insight in facial choreiform in PANDAS kids.

 

Many thanks

 

L

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For my son his facial chorea type movements presented as his mouth pulling down on one side as if he were having a stroke. He also presented with one arm flipping behind his back. His choreiform movements of the hands (when his arms were held out parallel to the floor) presented as if his hand were playing the piano. I hope these descriptions help!!

Edited by MomtoJake
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I would add the following link. And Yes there are many good videos to review. Problem is we don't look at them until after we have a problem. I think the severity and quantity of the untreated strep infections can dictate how severe the chorea is---just my speculation. My dd early on nose twitched (assumed allergies) then nose twitch coupled with nose scrunch/forehead scrunch/eyes roll back tic. This was the initial episode that we found out only after low+ titer. Subsequent known strep trigger---tested neg----she started nose twitch followed by the severe grimace. No eye roll. Our pedi told us PANDAS is very similar to SC. Any way, I hope this helps.

 

http://www.patient.co.uk/doctor/Sydenham%27s-Chorea.htm

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For my son his facial chorea type movements presented as his mouth pulling down on one side as if he were having a stroke.

 

 

Wait, My DS has this also! It's been unexplained for so long! C.R.A.Z.Y. How everything that has been unexplained for so long relates back to the PANDAS.

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For my son his facial chorea type movements presented as his mouth pulling down on one side as if he were having a stroke.

 

 

Wait, My DS has this also! It's been unexplained for so long! C.R.A.Z.Y. How everything that has been unexplained for so long relates back to the PANDAS.

 

I know, so crazy! And this one is scary right? I have video of my son presenting with this while his arms were doing strange movements and him calling out to me in the middle of it so scared of what was happening to him. At first I thought he was doing it on his own but then it became apparent that it was not. Several docs confirmed chorea and choreiform movements from this and several other videos.

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For my son his facial chorea type movements presented as his mouth pulling down on one side as if he were having a stroke.

 

 

Wait, My DS has this also! It's been unexplained for so long! C.R.A.Z.Y. How everything that has been unexplained for so long relates back to the PANDAS.

 

I know, so crazy! And this one is scary right? I have video of my son presenting with this while his arms were doing strange movements and him calling out to me in the middle of it so scared of what was happening to him. At first I thought he was doing it on his own but then it became apparent that it was not. Several docs confirmed chorea and choreiform movements from this and several other videos.

Thank you for all the replies.

 

Can I just ask - when did you/do you see these movements? Are they there all the time or do just certain emotions or events seem to trigger them?

 

Thanks.

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For my son his facial chorea type movements presented as his mouth pulling down on one side as if he were having a stroke.

 

 

Wait, My DS has this also! It's been unexplained for so long! C.R.A.Z.Y. How everything that has been unexplained for so long relates back to the PANDAS.

 

I know, so crazy! And this one is scary right? I have video of my son presenting with this while his arms were doing strange movements and him calling out to me in the middle of it so scared of what was happening to him. At first I thought he was doing it on his own but then it became apparent that it was not. Several docs confirmed chorea and choreiform movements from this and several other videos.

Thank you for all the replies.

 

Can I just ask - when did you/do you see these movements? Are they there all the time or do just certain emotions or events seem to trigger them?

 

Thanks.

 

The only thing I still really see is the facial chorea, although I think it has turned into a tic, if that makes sense. With my DS ANYTHING can start for one reason and turn into a tic. I do see it more when things are stressful. At onset of PANDAS in September, they were constant until he started Augmentin. Hope that helps!

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