Hope Catherine - rare movement disorder; clip 02
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Uploaded by Taragashi on Mar 4, 2009
This is our daughter Hope Catherine. She is 10 months old in this Video, and she still doesnt realize that she has hands, she doesnt know how to grab her toys, she cant roll over, she cant sit by herself, support her back or ever her head sometimes.
She has dystonia, which means one of her hands is tightly clenched and turned in a uncomfortable postion. This changes daily, switching hands while the other is relaxed, and some days we get lucky and both remain open. We noticed there was something wrong around 3 months old, when she still showed no interest in her hands and other babies her age were already bringing their hands into their mouths and grabbing toys.
At first we thought she was just a late bloomer, yet as time passed and she did not make any progress in developing like she should, we went to our doctor. We got the run around at first, with many hospital stays, MRIs, spinal taps, brain scans and nerve testing.
So far, she has passed all and she is healthy, except for the spinal tap they did. They said the results came back unusual, something that they have never seen before.
After much debate that she might have Segawa Syndrome, they decided to try
( Benserazide/levodopa ) on her, which has of yet showed no real progress in her behavior.
We would appreciate any feedback or ideas anyone has. We are gonna post the lab test and the temporary diagnosis in some forums and put the link into the comments soon.
Uploader Comments (Taragashi)
All Comments (6)
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PLEASE look into sinemet. It's a Carbidopa/levodopa supplement that has helped me live like I virtually do not have dystonia at all. I don't know if you would be responsive, but please look into it.
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Hi, there aren't any update videos in a while of Hope, I hope she is doing better, and the meds they have her on now are working to help her condition. She truely is a gorgeous baby. You are truely blessed to have such a wonderful daughter. Godbless your family
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Anat Baniel lessons
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precious from one mother to another i offer my prayer to you and baby Hope
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aw...she's so cute :(
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Some of your other videos look like possibly mitochondria disorder???
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Hi,
I will look into that and will forward that to one of Hopes doctors.
At the moment it looks like, that she has a rare / new disorder.
She is now for a few weeks with 5 other children ( worldwide ) in a dna-program.
Now we wait for a response from the doctors, that can take a while.
Taragashi 2 years ago