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For the last 2 days, dd8 says that her hands feel strange. She has to keep them moving. Rolling a small ball between them, clicking the tops of pens on and off, pulling a belt between her hands. She is upset about the sensation but can't describe it well. She says something is wrong with her hands. She says she has to do it. She can't stop, the only thing she says is that she has to move them. They can't just lay still. If she's eating, painting, coloring, writing, she is OK but if she's reading, watching TV, talking, her hands start to bother her.

 

It's bothering her enough that it's starting to bother me too!

 

Susan

Edited by Suzan
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Is that the piano playing that people refer to? I never understood what that meant so I could very well be incorrect. My son does something similiar, has to always be touching something. I always attributed it to anxiety.

 

Justine

 

For the last 2 days, dd8 says that her hands feel strange. She has to keep them moving. Rolling a small ball between them, clicking the tops of pens on and off, pulling a belt between her hands. She is upset about the sensation but can't describe it well. She says something is wrong with her hands. She says she has to do it. She can't stop, the only thing she says is that she has to move them. They can't just lay still. If she's eating, painting, coloring, writing, she is OK but if she's reading, watching TV, talking, her hands start to bother her.

 

It's bothering her enough that it's starting to bother me too!

 

Susan

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Is that the piano playing that people refer to? I never understood what that meant so I could very well be incorrect. My son does something similiar, has to always be touching something. I always attributed it to anxiety.

 

Justine

 

She is not playing the piano in the air but maybe if she didn't have anything in her hands it might?? I've been confused about the piano playing as well.

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Suzan, could this be an expression of chorea movements? Unavoidable movement that finds "its way out" one way or another?

The fact that she "feels the need" to be moving her fingers constantly would be concerning--

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Suzan, could this be an expression of chorea movements? Unavoidable movement that finds "its way out" one way or another?

The fact that she "feels the need" to be moving her fingers constantly would be concerning--

 

She says it's mostly her thumb and mostly on her right hand. The movement is similar to clicking a ball point pen up and down and up and down. If she's not doing the movement herself, it doesn't keep going involuntarily but she feels like she has to keep doing it and if she's not doing it, she's upset about it.

 

I don't really know what to do.

 

Susan

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Did you try the test that people recommend? Arms straight out with eyes closed? I just read a thread about that on this board. It came up when I searched chorea movements. I don't know what the milkmaid grip is either and that is mentioned. So much to learn :(

 

She is not playing the piano in the air but maybe if she didn't have anything in her hands it might?? I've been confused about the piano playing as well.
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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.

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

 

It seems to get much worse in the evenings which is her worst time and she has been more emotional and reactionary the past two days. Today she started talking about it as soon as she got home from school though which was much sooner than yesterday.

 

She asked me why it was happening and I said "It's PANDAS" and she said "I don't have PANDAS". This is a different response than usual too, normally it comforts her to know that something strange she is going has a reason. I'd say overall it looks like she's headed downhill.

 

Susan

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Did you try the test that people recommend? Arms straight out with eyes closed? I just read a thread about that on this board. It came up when I searched chorea movements. I don't know what the milkmaid grip is either and that is mentioned. So much to learn :wacko:

 

I tried that a few weeks ago on my other dd who never stops moving to see how she would respond and she was able to keep her hands still. Dr. T. checked them both for milkmaid grip (although I don't know what that is either) but neither had it. I will try on my dd8 tomorrow.

 

Susan

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My dd10 can't, CAN'T keep her hands still or most of her body (she often looks like she is doing break dancing moves) but especially her hands. This ties into her worst OCD symptom-picking! In the winter and spring, she picks at her fingers and toes-nails and cuticles; summer and fall she starts with mosquito bites that she can't stop scratching that turn into a wound that she can't stop picking. She's ulcerated several (one ER thought she might need a skin graph on her shin) and has scars all over her legs and arms. If there is anything that has made us close to taking her to a psych hospital, it's the picking she can't stop! You name it, we've tried it to get her to stop including long sleeves and sweatpants that we bound with masking tape at the ends. Lately, she's been rubbing her forehead with her fingertips, feeling for blemishes. It's ironic that with the abx the past two months, some acne has surfaced near her hairline on her forehead. My husband had bad acne when he was young and I'm so nervous about getting this all under control before puberty really hits and she scars up her whole face!

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Go to youtube and search on "chorea" or "sydenham's chorea" and you'll find several videos that might be helpful in understanding what it looks like. Just realize the examples are just that - if your child doesn't do the exact movement, it doesn't mean they don't have chorea. That's something only a trained physician can decide. You can probably do the same for "milkmaid's grip".

 

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.

 

Suzan - have you taken your daughter in to see a doctor about this? Sounds like chorea, but should be checked out so you have documentation.

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JAG10 - skin picking and nail biting and hair pulling (trichotillomania) are all different faces of a similar aspect of OCD. The following articles look at the use of n-acetyl-l-cysteine for hair pulling and may be worth considering...

 

http://ihealthbulletin.com/blog/2009/07/06...ichotillomania/

 

 

http://news.bbc.co.uk/2/hi/health/8132387.stm

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Thanks dut! I'll have to look into this re: dose, contras, ect.

 

We did CBT, which is very $$$, the same time we started the abx. I think that is what helped rather than the CBT since she didn't seem to be implementing anything she was taught, just rather "stopped." But I know with bugbites, the urges will be much stronger than the fingers, ect. in the winter. She doesn't bite anything, it's all picking. I remember when she was 21-24 months old, she picked off all the mid-wall border off the wall next to her crib. Maybe that's just a coincidence bcs the body picking started all of a sudden in 1st grade after she lost 4 primary teeth in one week. We can't coincide with any strep bcs she's never had diagnosed/physical symptoms of strep, just regular stuffy nose/coughs/colds, but now we know sky high titers we're having a very hard time getting to come down.

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Suzan - have you taken your daughter in to see a doctor about this? Sounds like chorea, but should be checked out so you have documentation.

 

LLM, we were just at the neurologist on Monday but this symptom had not started up at that time. He did do an exam on her and did not mention anything that he observed then. I've looked at the pictures of chorea and so far I don't see anything that looks like what I've ever seen her do. I'll try the milkmaids grip test since she wants to grab and squeeze anway.

 

Susan

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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.

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