5 Ways to Care for a Child With Muscular Dystrophy

1. Try Physical Therapy

Getting your child into physical therapy as soon as he is diagnosed with muscular dystrophy (MD) is an important step in caring for him during the early years of the disease. Learning what type of exercising your child can do at each stage of MD will improve his flexibility and range of motion. Muscular dystrophy is a progressive, degenerative disease, which means your child may have several years of "normal" mobility before he has difficulty walking, going up and down stairs and generally getting around. A physical therapist will teach you and your child how to manage these and other symptoms of the disease. The physical therapist may also suggest using braces on certain muscles near your child's joints to prevent muscle stiffening, called contractures, in these areas.

2. Engage in Drug Therapy

If your child has Duchenne muscular dystrophy (DMD), prednisone can in some cases help slow muscle deterioration. This drug is used mostly on children who are at least 5 years old or have shown a significant decline in muscle strength. Be aware of the side effects of prednisone, such as a loss of bone density that can increase the likelihood of fractures. Children who take prednisone may also gain weight as a side effect.

3. Address Respiratory Issues

If you have a child with MD, keep current with his vaccinations -- especially for illnesses that compromise breathing, such as pneumonia. Use humidifiers in your house to keep the air moist, so that mucous is easier for your child to cough up if he gets a cold. Due to the weakening of muscles in his chest, you may at some point in his life need to use ventilators to help him breathe.

4. Get Adaptive Equipment

Adaptive equipment can help kids who have muscular dystrophy gain more mobility and independence. Motorized wheelchairs, robotics that are used to reach things and service animals may all be possibilities for your household and family. Discuss the advantages of the various types of adaptive equipment with your child's physical therapist to determine what will be best for your child.

5. Heed Educational Concerns

Make sure that your child's school system is equipped to deal with any physical or mental limitations your child may have due to MD. Attend meetings to put an IEP (individualized education program) into place if your child needs one. Advocate for your child, to make sure he gets the services he is entitled to. As the parent of a young child with MD, ask your child's teacher if you can speak to the class to explain the disease to the other children. Your child's classmates may be scared and confused about your child's condition and afraid to talk to him or ask him questions. Having an adult reassure them can help your child fit in better with his peers.