My daughter has Down Syndrome too

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Posted by Mary on March 28, 2003 at 16:30:49:

In Reply to: Question??? posted by Elise on March 28, 2003 at 08:30:15:

Elise, My daughter also has down syndrome. she has had 5 strokes and surgery at Boston Childrens Hospital.Her last stroke after surgery last April left her with no use of her left side.We had no clue what was happening to Kahtleen until she got so wobbly she looked "drunk".She never complained of any pain. Once we got a diagnosis she then had another stroke in which she lost most of the use of her right arm.this didn't bother her at all, she just decided to use her left instead.Again no complaints, it happened while she slept.I'm not sure what you mean by the little broken cappilaries, but it reminded me of different times I had noticed tiny red spots on Kahtleen.( I remember it being on an arm or a hand)I'm not sure if it ever coincided with her strokes.The only thing I look back at and see as a possible clue that she might have had headaches was she used to wake up crying every morning.She would start whimpering before she even opened her eyes.This would go on for almost a half an hour.We now think she was wakeing up with a headache.I thought she just had a hard time wakeing up.Since her surgery she has had no new strokes and does not wake up like this.Kathleen had a third stroke on our way to BCH for surgery and then 2 more between surgeries.She is now starting to walk again and use her left arm some.She also has always been very High functioning.She started kindergarden this year and is totaly mainstreamed.She has a pretty heavy schedule of therapies in school.I would love to hear more about your daughter and how she is doing you can e-mail me if you like.

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