Thank you for making me feel welcome. I feel so much better being part of a group that actually knows where I'm coming from. It's difficult at times to relate to others but I feel that maybe now I can stay in touch with people who are coping with this same disease. I hope to hear from you soon. Have a blessed day!
Thanks so much for welcoming me.
My son has Duchenne MD. He has had the gene sequencing done but no biopsy. So they don't know the level of dystrophen in his muscles, but they do know that he has a stop codon. Our Doctor, Kathy Selby, Head of Neurology at B.C. Children's Hospital put Skyler on deflazacort right away. She said in her experience it's a must, the boys who go on it do much better. She told us that it extends their lives. She also said that boys who do the stretching, who swim regularly, who do blowing, breathing exercises do much better.
I am just coming to terms with the side effects. Skyler is more aggressive and difficult, he was always such an easy going kid. We are managing it but it has taken some adjustments and some work. Another side effect that is really bothering me right now is the roundness of the face and the short stature.
This is all so new to me... i still want it to just go away.
I have just joined this site. I can't believe what a wonderful, valuable, loving place this is. I am so grateful that you took the time to share your experience with me.
p.s. Jared is gorgeous.
Thanks for the welcome! I have not spent much time on the site yet, however I will so thanks for letting me know about the Dad's section. I am very involved with this and spend much time researching. Please take a moment and get to know Garin better. Thanks again. His website:
Thank you so much - Last week I had a young dad (probably in his mid-20's and his comment was "Lin.....you ROCK.....we couldn't have managed our trip without you." So, I'm thinking that's a high compliment these days!!
See you soon,
Kari, hi we saw a genetic cardio in Houston. We were told today by the neuro at the MDA that he believes Jonluke is Becker's and doesn't feel he needs steroids yet since he could run jump and had close to normal strength for his age and size. We are planning on getting a second opinion from Wong hope she comes up with Becker's to.
Hi Kari - Thanks. I've actually been a member for a while--never logged in officially I guess. I checked out your page from your link. Your son is adorable.
If you have some time one of these days, and if you're interested in sharing, I would love to pick your brain about your son's experiences with medicines and/or supplements. My son has been on deflazacort since he was 5 1/2--he'll be 11 this weekend. He is so short for his age (and we're not tall parents, so his stature was probably limited to begin with), and he is so upset about his height and his rounded features from the deflazacort. I am always interested in what other families are experiencing here, and how they deal with it.
Well, take care, and thanks for the welcome!
Susan Delete Comment
Thank you for e-mailing me. We have 2 boys with BMD. My wife and I are sponsoring a runner in the 2008 ING NY Marathon. We have a web-site www.teamtrecha.com to help in coordinating the awareness and donations. Please visit it. Please e-mail me at email@example.com. I would like to forward you an e-mail for donations to PPMD for the run.
I would like to discuss your son's BMD in more detail (soon). thank you Jeff and Amy
hi kari! my son started having difficulty in standing up when he was 12 and having bad posture and always corrected him for that. i also noticed how he walked so slowly on his way home from school. and i also told him to walk faster. it gotten worst that i sense something is wrong but i just keep it to myself. i hate the reality that my son has disabilities. then one day in front of the computer , my son told me that he already knows the name of his sickness and told me to check a link on favorites, it's muscular dystrophy. its hard to accept it at first but its harder when you watch your son walk esp on stairs. We are lucky that his classmates in high school are very supportive of him until now that they are in college, they waited for him in school and willing to give a helping hand. You know , i always tell him that its ok, all of us are not disease proof, everyone gets sick it is just sad that he is sick ahead of others.By the way he is doing well in his studies, its a lot more challenging but i know he is doing his best,.I know its an uphill battle for him but i just wish that there would be a cure someday.