Latest Activity: May 4, 2015
Started by Kate. Last reply by Pamela Schmidt Aug 12, 2013.
Started by Pamela Schmidt. Last reply by Jacqueline M McConnell Aug 12, 2013.
Just a quick question about the speech problems, how are these manifested? Just not talking or stuttering? Boys and Girls?
Sorry I didn't get back to you sooner. I'm just reading tonight.
Did you get the results of Kaitlyn's x inactivation?
My daughter Alice is 11 this year and is definitely gaining strength. She got her training wheels off last year (after some serious prodding) and then met every goal I set for her on the bike. I can't wait to see how she does this year. At clinic her physical tests, especially her legs showed improvements. She can swim 3 of four strokes, hula hoop better than I can and jump rope. My daughter can ice skate! My son can't even stand on skates and he is 1 1/2 years younger. Her X inactivation showed NO dystrophin production, but the docs at Childrens in Philly said unless they biopsy every muscle, there is really no way of knowing how much dystrophin she is making. She is being treated as if she has full blown duchenne like her brother and has been taking deflazacort for 3 years. She also takes approx 1gram of creatine monohydrate per day and 200 coQ10, 25mg losartan, supplemental calcium and vitamin D. She has some osteopenia which so far as slowly gotten worse (annual dexa for 3 years now).
Alice is the MDA goodwill ambassador for Anchorage, AK and has a full active Alaskan life.
Best to you and your daughters.
Hello Everyone, I have a daughter, Kaitlyn, who is 9, diagnosed DMD. She is 3rd generation. All the rest were boys. I also had the same problems getting her CK done. They said no way, your worrying too much, girls don't get it. Which I knew. But she looked so much like my brothers and tripped all the time and runs slow and gets fatigued easily. So we were finaly referred to MDA in Sacramento, Ca. Since then she has joined a study for 3rd generation DMD being done at Nationwide Childrens Hospital in Columbus Ohio. The dna analysis showed Duchenne and we are now waiting on the X inactivation results. But so far no one can give us any prognosis. Just a month ago, I requested that my 4 year old, Jada, be tested and her Ck came back high. So, I may have 2 girls with it. I just want to be connected with a support group. Thanx! Sherri
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