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I'm sure this is a problem for most parents of children with movement disorders, but since we're stuck waiting for an appointment with a pair of movement specialists, I figured I'd reach out to other parents.
I was recently told by a neurologist, "Well, I know you're daughter has a movement disorder, but I just don't know which one. I've never seen a case like hers."
My daughter Maria is almost 10. She had a traumatic birth and has some gliosis in the Occipital and Parietal regions of the brain, but I've been told by multiple neuros that it is small and not contributing to her current problems. Maria as always had some hypotonia, but met all her milestones as a baby on time.She's also had a tic of the right eye for as long as we can remember. When she was 8 she had and "episode" of movement that lasted over four hours. Her arms and legs moved, in very large motions mirroring each other, making her look like a marionette with someone jerking the strings. Prior to this episode she had complained at lest once a month for about 6 months that her leg was "moving by itself" though my husband and I had never seen this. We has an MRI, EEGs but the movement didn't repeat it's self. We did start to see more movement, her tongue would dart out and she had jumping muscles below her neck. I started to look on line at testing for neurological disorders and after seeing some things asked my daughter to stick her tongue out. Her tongue cannot be still. It writhes around of it's own accord. Doctors said they didn't know what was wrong, and that we should forget about it for now as it was not "affecting her daily life".
Six months ago she started waking up with hand tremors in the morning, but they would go away within an hour of waking up. We aslo started to see tremor some mornings in her calf muscles. In July she had an episode of leg shaking that lasted 30 minutes. In August she complained of being cold and I looked down at her legs and they were shaking. I wrapped her up in a blanket, hoping she was just oddly cold, but it didn't help, her legs shook for four hours that night and by the end her hands were making pinching motions, everything stopped when she fell asleep. The next morning it started again. We went a few days with no shaking, but then it started again and happened every day for over two weeks lasting anywhere from two to four hours. Since then it happens about once every week or two.
Since then we've seen two neurologists, had an MRI and EEG and an ambulatory EEG. While the EEG showed abnormal activity, it showed that the movement is not seizures, which I was already pretty sure of anyway. I've been recording all the episodes on video and the most recent Doc told us some of the movement looks like dystonia and some like chorea, and that the leg movement would be called tremor. I guess the tightening of her hands in pinching motions with the two middle fingers and the thumb is what looks like dystonia.
Sorry this is so long, but we need help.
Posts: 3 | From: Silverdale,WA | Registered: Oct 2009
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I guess I should also mention that Maria has had balance problems and coordination issues for the last year and a half. Mild ataxia and the coordination problems led to a reccomendation for physical therapy by her school.
Posts: 3 | From: Silverdale,WA | Registered: Oct 2009
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I am so sorry this is happening to your daughter. My darling 16 year old boy continues to keep our team of doctors baffled with his "unknown" condition that causes very similar episodes of involuntary movements. JD has been placed on a new round of muscle relaxants and an anxiety med but the episodes continue to make themselves known with very little earning and no obvious "triggers". We're in the trenches with you and hope your girl goes well with physio and whatever services are available to help her.
-------------------- "Make each moment last forever..." Posts: 5 | From: Australia | Registered: Sep 2009
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Thanks JD's Mum, just having solidarity can help sometimes.
Stuart-s, no she's not on any antibiotics. Why? I know the doctor did a blood test to see if she's had strep, but it came back negative.
Posts: 3 | From: Silverdale,WA | Registered: Oct 2009
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The strep infection could have been during the summer or at any time in the past. Anyway, search out Sydenham's Chorea on .edu sites in the advanced google search. I don't completely understand it but there is also a connection to acute rhuematic fever. My little girl will have to be on low dose amoxicillin for years.
I also posted under Sydenham Chorea. Hope this helps.
Posts: 3 | From: chicagoland | Registered: Oct 2009
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