Muscular Dystrophy in Children: Care Instructions

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Your Care Instructions

Finding out that your child has muscular dystrophy (MD) can be upsetting. You may be worried about your child's future. But many people with this disease live an active life.

There are several types of muscular dystrophy. Each type affects the body differently. Some types show up early, and others show up later. But all types are caused by inherited genes that weaken muscles. Your child's doctor may do tests to know what type your child has. These include genetic tests and a biopsy of your child's muscles.

There are three common types of muscular dystrophy.

  • Duchenne muscular dystrophy mostly affects boys starting at age 3 to 5. Boys with Duchenne MD may be unable to walk by age 12. They may also need a respirator to breathe.
  • Facioscapulohumeral MD affects boys and girls in their teen years. This type causes weakness in the face, arm, and leg muscles. This weakness may be mild or disabling.
  • Myotonic MD can appear at any age in boys or girls and usually develops slowly. It causes muscle spasms that make it hard to relax. The muscles also weaken and get smaller. It can be mild or severe.

There are many treatments to help your child stay as active as possible. These include medicine, physiotherapy, and devices to support the muscles. You can work with your doctor to make a treatment plan.

Raising a child who has muscular dystrophy can be hard. It may help to join a support group or talk with other parents who have a child with special needs, so you don't feel alone. You may also want to try counselling. It could help you understand and deal with all the emotions you may feel.

Follow-up care is a key part of your child's treatment and safety. Be sure to make and go to all appointments, and call your doctor or nurse call line if your child is having problems. It's also a good idea to know your child's test results and keep a list of the medicines your child takes.

How can you care for your child at home?

  • Learn how to do range-of-motion exercises with your child. These can help your child's joints stay flexible. They can also help keep the back straight. A physiotherapist can help you set up a schedule and teach you how to do the exercises.
  • Talk to your doctor about special devices to help your child keep good posture and stay active.
    • Braces can help the hands and lower legs stay straight and be flexible. Back supports or corsets help keep the back straight.
    • Standing walkers will help your child stand. This is important to keep bones strong and the back straight.
    • Wheelchairs help a child with weak legs get around and do activities.
  • Be safe with medicines. Have your child take medicines exactly as prescribed. Call your doctor or nurse call line if you think your child is having a problem with his or her medicine. You will get more details on the specific medicines your doctor prescribes.
  • If your child has pain from inflamed joints, talk to your doctor about over-the-counter pain medicine. If he or she recommends it, give acetaminophen (Tylenol) or ibuprofen (Advil, Motrin) for fever, pain, or fussiness. Read and follow all instructions on the label.
  • Do not give your child two or more pain medicines at the same time unless the doctor told you to. Many pain medicines have acetaminophen, which is Tylenol. Too much acetaminophen (Tylenol) can be harmful.
  • If it's hard for your child to close his or her eyes completely, try eye patches or sleep masks at night.
  • Gently massage your child's limbs and joints. This can help with pain and stiffness. Heat will help too. Put a warm, moist cloth on the sore area.

Handling the challenges of muscular dystrophy

  • Learn about the disease. This will help you know what you can do to help your child. Then you don't have to fear the unknown.
  • Focus on your child's strengths. Let your child know that you love and believe in him or her.
  • Give your child some responsibility for his or her care. Children who have a say in their treatment often stay healthier.
  • Be aware of possible challenges. Children who have muscular dystrophy may have more social, emotional, and educational problems.
  • Consider joining a support group. If you share your experiences with parents who have challenges like yours, you may feel better. You may also want to try counselling.
  • Be realistic. Do the best you can, and know that you can't control everything.

When should you call for help?

Call 911 anytime you think your child may need emergency care. For example, call if:

  • Your child has trouble breathing or swallowing.

Call your doctor or nurse call line now or seek immediate medical care if:

  • Your child has any vision problems.
  • Your child seems to be getting weaker.

Watch closely for changes in your child's health, and be sure to contact your doctor or nurse call line if:

  • Your child strains when having a bowel movement and seems to be constipated.
  • You want to learn more about muscular dystrophy.

Where can you learn more?

Go to https://www.healthwise.net/patientEd

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