Posted by Mary on May 02, 2003 at 11:27:22:
In Reply to: So many questions...so few answers! posted by Shana Turner on May 01, 2003 at 19:43:31:
Shana, It really hit me also to hear of your loss.My daughter Kathleen has MM.She is just 6 yrs. old.I feel very strongly that without the early diagnosis,and surgery, she would not be here with us today.Kathleen suffered 5 strokes in just 3 months time. 3 strokes at the time of surgery,the last of which was severe, and left her totaly paralized on her left side.It is through other people with MM that I have found so much information.I have to thank DJ for this awesome site.I hope that you get answers. I'm not sure if I could answer any but there are so many wonderful people here.I have found that when I look back to before her diagnosis there are some things I missed that could have been VERY subtle warnings.I have also learned to trust your "GUT" feelings. I knew there was something very seriouse going on wiht Kathleen,but let them spend time with other tests before neuroligcal tests.Hindsite is a wonderful thing if you don't "beat yourself up over it".I too am still trying to figure out all that I don't know about this.There are just too many Dr.'s who don't know about it.My daughter also has Down Syndrome which is condsidered a "higher risk" group for this disease.I have read all the medical lists of things to test for and watch for ,but this is not one of them.I'm not really sure if maybe it should be.Prayers are with you and your family for the peace that may come with the answers you search for.
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