So I see your son has a problem with anger and behavior. My son is very angry he throws food hit's kid's. I had my pop sitting at the table and he wanted to wash the table he threw my pop and just dumped it all over the floor. He doesn't listen very well either. We do counseling and pshychiatrist and other therapy that helps. But my son is also on Prednisone for the DMD. My son also has Autism. I was just wondering what bad behavior your son has and what do you do to treat it. Thanks Amanda
p.s we came to give kids the world villiage too! All the way from the U.K, it was one of our best holidays! Frankie was 14 at the time, and wouldn't have his picture taken with mini and micky! lol, but he loved epcott and we visited all the countries around the lake, he said he felt like he'd travelled the world!
Hi, thanks for your wall comment. You have a lovely family! Frankie was 19 when he passed away, but it was only a few months ago, and to be honest I feel more like an active parent than a bereaved one. We've been going through a lot emotionally, because we miss him so much, but I still feel like a parent, that part doesn't change!
No, I have two daughters with severe Obsessive Compulsive disorders and Tourrettes Syndrome. I am very good friends with The Colliers, who son has it. I used to be his teacher before they moved to Florida. I am very interested in learning about this disorder and willing to be an ear for anyone who needs me.
Hi Jessica - We were at GKTW in August 07 and are going back to Disney Thanksgiving week. Our son, Garrett, is 7 and his immunolgist wants to put him on Losartin to see if it helps his DMD condition. Garrett also has Jobs Syndrome (immune defiecency inherited from me his dad) and they are using Losartin with other Jobs patients. Garrett has been on Deflazacourt for over a year now and will soon be wheelchair bound. Anything to add regarding Losartin for us to consider? Thanks - Ronnie
Thaks a lot, Jessica. PPMD is helping us get out the word about a study we're doing, which involves interviews with adolescents with DMD and their parents. I'm hoping that my participation in this Community website will help me have a better understanding of issues that are important to DMD families. I don't know if we'll get as far as Wisconsin for this study, but I'd be happy to pass along any information if you're interested. Thanks again.
My husband, Brian and I have tried to treat them as normally as possible. Our youngest son went through some anger issues when he stopped walking. I think it was harder for him because he walked the longest. I truly think what helped is meeting other boys who were in the same situation he was. First at camp and then when we started a teen support group. This group doesn't just talk about their disease, they also focus on normal teen activities. I found that to be a big help. We've also tried to keep them involved in teen activities. Our oldest, Ryan, managed his junior high and high school football and baseball teams. He really made a lot of friends and earned tremendous respect from others.
If your son needs a pen pal, please have him e-mail my boys. I'm sure they would be more than happy to meet Duchenne kids from out of state.
I don't really like fish! Cody didn't go to camp this year because he is in a power chair and we have no way to transport him yet can't afford a handicap accessible van and you have to provide your own transportation so hopefully next year. How about nick does he go to camp?
Nick struggles tremendously with rising. From the floor he needs help; from a seated position he leans forward and tries to support himself to standing. His right ankle tendon is quite stiff and he occasionally scuffs and trips. We've not yet investigated the power chair, but it may be needed in the future. Hey, what's your favorite fish fry?
Hi Jessica and Gary--
We live in Mukwonago; our son Nick is 9 and has Duchenne. Does Cody go to camp? I feel that we Wisconsinites need to strengthen our PPMD community to put pressure on our legislature (Russ? Herb?) to support the MD Care Act. I've emailed and talked to staffers, but it hasn't made a difference thus far.
I know. Things get expensive quick and it seems like all at once. We got him a power chair used to use around the neighborhood when he gets fatigued. I would like to get a Honda Element conversion when it comes to that time to transport him in a chair full time but we'll see how things go. We still are trying to finish our house accessibility. W try to be as proactive as possible so we can have things ready when we need them.