Muscular Dystrophy

Good morning everyone. I am a prenursing student and while I don't post very often I read these boards everyday. I have gotten some very valuable information from all of you. Anyway, a few days ago my 18 month old grandson was diagnosed with Duchenne Muscular Dystrophy. We have no family history of this disease. I was wondering if any of you have worked with kids with this disease? Do you have any advice for caring for him? Right now he just seems like a normal baby, except for his milestones have been very delayed. His mother (my daughter) is only 19 years old, so this is really going to be difficult for her and I would like to be able to help as much as I can.

Thanks so much,

Kim

Hi Kim:

Such a diagnosis "out of the blue" must be very, very difficult for you and your family. I have never dealth with boys with DMD, but used to work on a ventilator unit with young men (20's and 30's) who had this disease. As you are well aware, the overall prognosis is not good, but there is always the hope of a cure on the horizon. Your precious grandson should be encouraged to lead as normal a life as possible, and your daughter will need much support. It is good you are there for them both. First of all, what sort of interdisciplinary support does your daughter have for your grandson? A referral to an experienced pediatric physical therapist is definitely needed for strengthening exercises, equipment, and to avoid falls and contractures. A genetics referral should also be made for your daughter as the chance of this occurring in future male sons is 50% and 50% of female children will be carriers.

Here is a good website: http://www.mdausa.org/disease/dmd.cfm

Hi Vicky, Thank you so much for the reply. He has been set up with a physical therapist at the MDA clinic, and I think there is another one that will be coming to the house. As I mentioned, he has very delayed milestones, for example he has just now learned to sit up on his own at 18 mos. The therapist is hoping to have him standing within six months. I do hope he is able to learn to walk, if only for a time. I know this disease does not usually show up until about 2-6 years old, so we are not sure why he is showing signs so early. Thanks again for the info.

Kim

Vicky,

I have a 12 year old nephew with Duchenne, and I also volunteer for MDA for various fundraisers and am a volunteer counselor for their summer camp. I would recommend getting involved with MDA as much as possible, as they are an amazing organization who can provide a tremendous amount of help to your family and your grandson, from medical treatment to support from other families.

I have watched my cousin grow up with Duchenne, as well as have many friends with different forms of MD from working with MDA. These kids are all normal kids, but have some extra special needs and need some extra help with some things. Being the young age that your grandson is, he hopefully won't have too many problems right now, but they progress over the years. Staying active, positive, and letting your grandson do everything he can by himself (and being a normal kid) will be great. Get involved with MDA and all that it has to offer. My thoughts and prayers to your family.

Jennifersusan, I think it is wonderful that you have devoted your time and efforts to the MDA. You are an angel! I feel bad, I remember always watching the telethon thinking "that's really sad, I'm glad that's not MY family"

It's sad that a lot of people (especially ME) wait until it happens to them before they get involved. I plan to get involved with the MDA and doing some fundraising and volunteering myself. God bless you!!!

Kim