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Hi- It's been a while since my son has had any type of flare up. Seems like lately he may be in a mild one. One thing I'm noticing that I'm wondering if others notice as well is it seems he has decreased strength in his hands. He is 11, and struggling to open yogurt, can't tie his shoes, can't cut a pork chop last night at dinner (and I know they weren't that tough! My twin 9 year olds were able to cut them!). Does anyone else see this lack of strength in flare ups? I'm struggling to determine if we are in a flare or if this is starting-middle-school-jitters or what. Thoughts? Thank you in advance!

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I've definitely seen this in my own son when he had a flare.  

For my son, it was pretty easy to check how well his brain to hand and finger planning and communication were working. It correlated really well with choreiform movements.  (sometimes called piano-playing fingers), done as part of a Romberg's Test.

How to check for that?

Ask your kid to stand with their eyes closed and with all muscles getting the message to be outstretched, but having to rely on proprioception (the internal nerves that tell you where your body parts are in space, and which way gravity is pulling them)  to stay vertical, with arms and fingers in place.  So what you are asking your kid to do is

  • stand straight with feet together,
  • arms straight out, about shoulder width apart,
  • fingers straight and spread out real wide.  

If you're doing this the first time, make it safe -- be physically close, or have them stand a half foot in front of a wall, just in case they start swaying soon after their eyes are closed.  

The goal is for them to stand like that for 30-40 sec or so, and see if by that point they're still steady, and their fingers stay straight.
When my son was in a flare, within 5-10 seconds I would see his fingers wiggling irregularly, sometimes also his arms / shoulders moving to adjust his position.  Sometimes you also see the body sway, the head and lips move. 

Note:  Initially when I tried it on him, I hadn't expected that his control was as bad as it was  -- I actually thought he was playing with me, swaying, grinning and opening his eyes on purpose to stop the test. He got so upset when I told him that that -- 'cause he WAS trying.  I later realized that shutting his eyes tight may also have been adding a load to his brain's planning; that at times he may not have full control of his face when he's also working to keep upright and other things stretched.  

In this video of an evaluation on a kid with Sydenham's Chorea, you see this test done at 1:00, with the child seated, since he doesn't have the control to do it standing.  And then after you can pay attention to the involuntary hand movements.

So imagine cutting meat when you have such poor control.   It's gotten better, but it helped for me to just say, "so this week it's better if I cut your meat?"  He certainly took that over as soon as he felt he could trust himself!

 

Good luck!
 

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Let us know how if you find choreiform movements!  
And if you do, I suggest taking  a video.  Being able to show that helped me communicate with my kid's neurologist and the psychiatrist -- and at least once it got him a more thorough exam and more appropriate treatment. 

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