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Thank you for the info. This is helpful. My son and I tried the test with the hands (we both did it to make it fun) and he says my fingers moved alot (my eyes were closed). Oh boy. I couldn't really tell with his fingers though. I'll try again today since you mention having them stand for a while. We didn't do that. I have to ask though, how did you determine the chorea in his toes?

 

Milkmaid's grip is when your child grabs on to the doctor's fingers and squeezes. If during the squeeze, the doctor detects pulsing movements in the grip - a squeeze/release/squeeze pattern like a milkmaid milking a cow's teats - it indicates a neurological issue. Same thing if your child holds their arms out straight in front of them for quite awhile and as physical stress sets in, their fingers involuntarily move up and down as if they were playing the piano.

 

I used to get upset when my son, even at his worst, didn't play the piano. Maybe it really was TS...turns out he showed chorea more in his toes than in his hands.

 

I did this for dd8 today and could not feel anything when she gripped my hand. But when I had her hold out her arms/hands until they got tired, her fingers did not start playing the piano, but they did start twitching fast in her thumbs an fingers. I think we have an issue here.

 

Susan

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If I have my son put his arms straight out and close his eyes, his fingers only move a little, but if I have his put them straight up in the air, the fingers movements and his hands waving in the air is much more noticeable. Also, they really have to splay the fingers out. I didn't realize that was part of the test the first time I had him do it. I haven't had him do it for awhile, I think I'll check again today.

 

Also, according to Swedo's lecture at the autism conf. a few years back. This is normal until the age of 6 or so. My younger son that I've been worrying may also have PANDAS is barely 7 and he definitely does this.

 

My older son, at his worst couldn't sit still on a chair. He would wiggle and writhe around, flip upside, put his feet all over the place, etc. I don't know how he was in school, but I would watch him at the therapist office, and be amazed that he really couldn't seem to help it. Once we got his Zoloft tapered to 50 mg, it stopped. I think it was definitely choreoform movements and one of the studies I read here or over at PANDAS CENTRAL confirmed that SSRIs activate CamKinase II.

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I've been wondering if my son had Chorea when this started too. I pulled a video out taken 6 years ago when this started. I have to show Neuro for diagnosis but a local doc. did look at it and thought it probably was chorea. In the video, my son could not stop moving. At one point, he was doing a little dance with his feet and upper body movement but I noticed his hand was down by his side and his fingers wiggled as if playing the piano. This happened a few times with his hands. He also had the facial twitching, hand writing became illegible.

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The sensation has now moved into her big toes and legs and she spent a good portion of the evening moving her thumbs and toes back and forth. It was very disturbing to us both and she cried to make it stop. She said it is like a force and she can stop it but not for long and she 'has to do it'. It gets worse at night but it was happening at school today. I put her in an epsom salt bath and that got her calmed down enough and she went to sleep soon after. I have a call into both her doctors but they are both out of town.

 

Earlier today I had her put her hands in the air and close her eyes and her fingers do move a little like piano playing (but not a lot) and they twitch.

 

Susan

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Was your daughter able to get some sleep last night? Dr's out of town - isn't that always the way when you need them the most? :( I hope you hear from someone today. Keep us posted.

 

The sensation has now moved into her big toes and legs and she spent a good portion of the evening moving her thumbs and toes back and forth. It was very disturbing to us both and she cried to make it stop. She said it is like a force and she can stop it but not for long and she 'has to do it'. It gets worse at night but it was happening at school today. I put her in an epsom salt bath and that got her calmed down enough and she went to sleep soon after. I have a call into both her doctors but they are both out of town.

 

Earlier today I had her put her hands in the air and close her eyes and her fingers do move a little like piano playing (but not a lot) and they twitch.

 

Susan

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How's she doing otherwise? Have any of her other PANDAS symptoms ramped up?

 

My DS generally has to keep his hands busy, and he figits a lot with them. It used to pencils and pens (clicking, like you mentioned), and more recently he's moved on to holding, stretching twisting one of those covered rubber bands you use to tie back pony-tails (he's been growing his hair out and sports a pony-tail from time to time). In general, if he's not actively writing or typing with his hands, he has something else in them, fidgeting. We've even purchased several "stress balls" so that he has something to squeeze when he's reading, watching TV, etc.

 

The "chorea type" hand movements I've seen described -- "piano playing" -- we only see in him when he is in meltdown mode. If he gets stressed out about homework or something along those lines, he starts curling his fingers into a lose fist, then fans them out again, and curls them in again, over and over until he's got the meltdown under control.

 

And it is mostly his dominant (right) hand; he doesn't do it much with his left at all.

My son also has constant hand movements, his choreiform movements are pretty extreme sometimes, especially if he's happy or upset, just can not stop them. Usually twists/pulls on a rubber band, he will communicate that he can't control it...same with body movements, in general.....can't stop.

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Was your daughter able to get some sleep last night? Dr's out of town - isn't that always the way when you need them the most? :( I hope you hear from someone today. Keep us posted.

 

Thanks for your concerns! She was fine after going to sleep and did have a good sleep. I left a message with the neurologists office today but did not hear back. She was MUCH better tonight and did not complain much about the sensation. She has a cough now so I am guessing she is fighting something, maybe that was causing the reaction in her hands and feet?

 

As far as your son goes has he been seen by a neurologist?

 

Susan

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I was going to say this sounds like chorea. Another possibility is that it might be a tic? Tics do go away when they are asleep. the reason I think it may be chorea, though, is that my son describes the weird feeling in his hands when the chorea starts (just had a really bad episode of it the other day.) Either way, they are definitely symptoms of PANDAS, and if an infection is starting up (can be strep or even viral...it will trigger it...neurologist said so). If symptoms are really bad, and you can't get hold of the neurologist, try seeing your local pediatrician and have him/her get hold of the neurologist (I have found that doctor to doctor gets hold of the neurologist almost immediately.)

 

Good luck.

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I'm glad your daughter is feeling better.

 

We have seen a neurologist but not since last year. Our neurologist left the practice this summer and since they didn't really do much except to say that he will just outgrow the tics, I have not been in a hurry to go back. I would like to find a neurologist in the area who is more open to PANDAS and other possibilities. Our integrative dr who is open to other possibilities ordered the wrong strep test and I just realized (two months later) so now I don't know where to go....

 

Justine

 

Thanks for your concerns! She was fine after going to sleep and did have a good sleep. I left a message with the neurologists office today but did not hear back. She was MUCH better tonight and did not complain much about the sensation. She has a cough now so I am guessing she is fighting something, maybe that was causing the reaction in her hands and feet?

 

As far as your son goes has he been seen by a neurologist?

 

Susan

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