Physiatrist (Physical Medicine) Questions Duchenne Muscular Dystrophy

What else can I do to help my son's muscular dystrophy?

After he was born, my son was diagnosed with Duchenne muscular dystrophy. He's currently on drugs that are still in their clinical trials, and while he's shown some progress, I feel like he should be in some sort of therapy to prevent further muscular weakness. Are there any physical therapies that my son should be a part of? Alongside his pharmaceutical treatment?

3 Answers

Muscular dystrophies unlike most other musculoskeletal conditions needs low intensity therapies. Please have your son see a neuromuscular physiatrist and physical therapist to help guide him on what he should and shouldn't do in terms of physical activity.
I am very sorry to hear that. You do not mention your son's age and this disease progresses at different stages. I am sure you know it’s genetic, so therefore getting family members tested pre-pregnancy is important. Apologies, as you are probably aware of this. The good news is that life expectancy is getting better and there are new methods of research. All very positive. I am very up to date in this disease as I have looked after lots of children with a team of my respected colleagues. Absolutely, the child needs therapy. It’s important to have this every day. In fact, the physio can show you the exercises to be carried out at home also. I find water therapy the best. You have to have a support team around you, and at different stages of the disease, you will need different specialists. This is how I would help you, but do remember this is my way. You may have these people in your child’s life already, so again, forgive me.

You need to have a pediatric neurologist, physical therapist, occupational therapist, orthopedic physician, clinical nurse specialist, psychiatrist/psychologist, dietician, care coordinator, social worker, and genetic counselor. At later stages, a pulmonologist and a cardiologist. This is the team I work with to improve the quality of life in a child. It is imperative that you surround yourself with the best. You may, if not already, get referred to a social worker to get things in place. You will probably require adjustments to the home, etc. You must get all this in place. In Edinburgh, where I trained, we all work as a team in the children’s hospital to make life easier for the parents and the child. I also would encourage you to get in touch with a group of like-minded parents and join in the research of this disease. Though it’s rare affecting boys more than girls, there are substantial amounts of parents who you should get in touch with to help support you also. I wish you all blessings for the future and it will be bright. I have had some of my children go on to be married and have degreed education.
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There are many physical therapists that specialize in pediatric therapy. Depending on the state you live in and your insurance company will vary on ways to set up a physical therapy appointment. Feel free to find clinics in your area who specialize in pediatric physical therapy and they will be able to address this question with more information.