1. Start Physical Therapy at an Early Age
If your child has Duchenne muscular dystrophy (DMD), get him into physical therapy as early as you can. This form of MD mostly affects boys and is diagnosed when a child is between 2 to 6 years old. Your child’s physical therapist will teach you what type of exercise is safe for him to do in the early stages of the diseases. When he can’t walk anymore, he’ll do passive stretching in therapy to maintain flexibility. You will learn about the kinds of splints and braces that reduce stiffness near your child’s joints and about the types of adaptive equipment that is available to you.
2. Cope With Emotional Issues
Coping with the emotional issues that stem from having a family member with Duchenne MD is a dual task for parents. On the one hand, you’ll need to help your child deal with being different at school and perhaps needing surgery for scoliosis as well as the anger he may feel about these issues. After you have taken care of your child’s emotional health, you need to manage your own feelings about the disease and how it’s affected your life and family. Get information about support groups for families of people with neuromuscular disease from your local hospital or Muscular Dystrophy Association (MDA). Meetings such as these can provide support and encouragement for the entire family.
3. Coordinate an Expert Medical Team
With your primary-care doctor’s help, put together a team of specialists in whom you trust. The professionals who are usually involved with DMD include physical therapists, an orthopedist, a neurologist and sometimes a dietician. The staff of your child’s school should also be involved when needed. Many children with DMD have developmental delays and may need to have IEPs (individualized education programs) at school.