Sounds like you are doing everything you need to do. It's good not to know the exact progression, believe me. It keeps hope alive. Even in the boys there is variance. I'm not sure if the Deflazacort is overkill for Alice. It has terrible side effects. For instance, she has stopped growing. There is an argument that small stature is beneficial to duchenne kids so who knows... We are going to take this up at Shriners in Portland where we plan to have her seen in May. (Alaskan docs are great but they dont know what to do for her. I do push her to a point. Call it strong encouragement. I want to see what she can do-where she is able to gain strength so she can use what she's got. It's a fine line though. I push her much harder than my son.
Hello Jacqueline, Kt already has a diagnosis from dna analysis. That definitely shows Duchenne. The MDA doctor is the one who wants her in braces all nite (we are working on that) and no, they have never suggested drugs and hopefully they won't ever have to use them. They do have ot and pt and we have learned stretching exercises that have to be done every day. They also have pool therapy 3 times a week and I really think it's all helping. I had questions bcus of the way Kt swims. Her top half is straight but her hips and legs turn to the side. We found out, this last time at ortho appt, that her right side is very tight. So in the water her body pulls up on that side. Anyhow, I guess we just keep learning as we go. And stretching! What's really bugging me is that I was told we would know progression based on the X test. But I'm finding out thru my research that we still do not know, because it all depends on which cells in which muscles are affected. With your daughter, do you think the Deflazacort is helping her acheive the goals you've set? And do you push her in exercising or let her go at her own pace?
Hi Jacqueline! We finaly found out results for Kt's X test, and I am even more confused now! MDA doctor said it came back 50/50 so she will be fine, he even said in front of her that she could grow up and have children!! What? A confirmed DMD carrier?! He didn't want to listen to or answer my questions, but pretty much just kept saying she's not a boy, so I don't need to worry about anything. That's not what I'm hearing from her therapists and ortho doc tho. She is tightening up, especially on her right side. She also sits more on her back instead of her behind, because her hamstrings are tight. I'm just trying to figure it all out.
Hi Jacqueline, I'm sorry to take so long to answer! Time just flies by! No, we have not heard yet about her x test. They had to retake it bcus insurance wouldn't cover it at first. Now we are trying again, hopefully with results this time. Kt still rides her bike and is pretty active, she does pay tho with leg and feet cramps and spends a lot of time recuperating thru-out the day. My youngest, Jade, is 5 and showing more progression than Kt at this age. So I am really hoping they will be able to get her x-inactivation test done soon. It is great to hear that there are some things to do now that will help slow down progression of this disease. I wish all the best for your children! and thanx for your interest in mine! All the best, Sherri
Yep...this summer is being referred to as "ONE HOT SUMMER" at our house...we have had several outings on our buggy, bar-B-Q's, birthday parties. Only downer for my son is no summer camp. And since he will be 18 next year this year would have been his last one.