Duchenne Muscular Dystrophy.

Kerri - posted on 02/12/2009 ( 7 moms have responded )

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I have a son who is 15 with Duchenne Muscular Dysrophy. I was just curious if there were any other mothers of children with this disorder in this group.

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Amy - posted on 12/02/2011

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Hi Alba. I have a 15 year old son with DMD. He is a freshman in high school. I would love to chat with you about the changes that are occurring with him and my goal to continue seeing him happy!

Alba - posted on 04/11/2010

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My name is Alba, I have a 17 years old son with DMD, is anybody interested ti chat about our children's condition and quality of life? feel free to contact me anytime...

Alba

Bethany - posted on 03/29/2009

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Hi. I have a nearly 14 year old son with DMD. J was diagnosed when he was 4 and is now in a power chair full time and attending high school fully mainstreamed. We are very lucky that even though we are in a small town in Australia the high school is fully accessible with lifts and special bathrooms and a modified science lab station.



At 15 are you having trouble with your son growing out of all of his equipment? Mine is nearly 6 feet tall now and we are having to order a new chair and everything!



Nice to meet you!

Melissa - posted on 02/25/2009

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Owen's health is pretty good. He has a deletion at 52 so we are excited about the exon skipping that is targeting around his deletion. He is staying at home with me right now, but next year he will be in pre-k at our elementary school. Secondary health issues? I'm thinking he has behavioral issues and I'm actually about to call my pediatrician about them. Thankfully Maryland offers a ton of resources for specials needs children. He has been in some sort of speech, OT, or PT since he was 9 months old. Right now he gets speech every other week and PT and OT once a month. I'd like to get PT more often and so I will be discussing that at our next visit. Owen is in a 5 year trial right now for DMD boys ages 2-21. Its called the Natural History Progression (i think). Basically he is just watched for the next 5 years for muscle strength and other stuff. It will compare him with other kids of his age and also consider kids with the same deletion as he. We also fill out questionnaires due for the family to see how standards of living are. I will probably allow him to do clinical trials when he gets a little bit older. I really have my fingers crossed that something is going to come about to treat our sons' disease.



Thankfully I have obtained a great support group in MD of other family's with children of DMD. We all live within 20/30 miles of each other and try to see each other frequently. My husband has been volunteering at MDA summer camp as a counselor since we found out of the diagnosis. It's his favorite week all year!



His diagnosis encouraged me to go back to school and now I'm studying to be a nurse. Hopefully I'll get the skills to help him out later in life when he needs it.



 



 



 



Kerri - posted on 02/23/2009

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We are located in Mississippi.  We attend treatment centers in Jackson.  We have been very involved in the local MDA, doing fundraisers, telethons etc.  He was actually the MDA Goodwill Ambassador for our state for 2 years.  His name is Casey Waites.  There are also several online organizations for muscular dystrophy that have been formed by parents that are helpful. 



Casey was on steroids for about 5 years.  He is not on them anymore though.



How is your son healthwise?  Is he in school?  Does this run in your family?  Does he have any secondary health issues?  Are you having any difficulty with any resources?  Is he is school or a preparatory class for school?   Have you been involved in any studies yet or do you intend to?

Melissa - posted on 02/23/2009

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I was just about to post about this myself! My son also has Duchenne muscular dystrophy. He is 3 and going on 4 in April. Owen was diagnosed at a very young age of 3 months old. We are attending Childrens Hospital in DC for his care. He typically goes about 4 times a year. He has been on a low dose of steroids since he was 2 years old.



We are located in Baltimore, and are very active with the local MDA. Where are you guys located, and what is your son's name?



 



Good to meet you!



~Melissa~

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