Muscular dystrophy is a rare inherited disease of the nerves and muscles that occurs mostly in males. The most common type of muscular dystrophy causes rapid muscle wasting and progressive weakness early in life, usually between the ages of 2 and 5.
Muscle wasting begins in the shoulder and pelvic areas. Fat and connective tissue may grow into muscles and cause abnormal enlargement (hypertrophy), especially in the calf muscles of the legs. Within several years muscular dystrophy affects the muscles of the upper body and arms. Eventually all the major muscles are affected.
There is no cure for muscular dystrophy. Treatment involves controlling symptoms.
What are the symptoms of muscular dystrophy?
There are different types of muscular dystrophy. The symptoms will depend on what type your child has. They will also depend on how severe your child's case is and how far the disease has progressed.
For most types of muscular dystrophy, the main symptom is general weakness in the arms, legs, hips, or shoulders. Other symptoms include:
- Facial weakness.
- Trouble walking.
- Frequent tripping.
- Learning delays.
- Heart and lung problems.
What causes muscular dystrophy?
Muscular dystrophy is caused by inheriting changed genes. The changed genes make it hard for the body to build and maintain healthy muscles. All kinds of muscles can be affected, including arm, leg, and breathing muscles and the heart.
How can you prevent muscular dystrophy?
The only way to prevent muscular dystrophy is to avoid passing on the gene that causes it. You can find out if you carry the gene. If you do have the gene and you want to have children, your doctor can tell you about options to prevent passing the gene to your child.
How is muscular dystrophy diagnosed?
Your doctor will do a physical exam. During the exam, the doctor may watch your child walk. Your child may be asked to do simple tasks, like stand up from a sitting position on the floor. The doctor will also ask questions about your family's health history.
If your doctor thinks your child may have muscular dystrophy, the doctor will do blood tests. Genetic tests will also be done to make the diagnosis. A muscle biopsy or a test to see how the muscles respond to stimulation might also be done. The muscle tests are less common.
Since the condition is passed down through families (genetic), you might think about genetic testing for other family members. It can help find out the risk of passing on the gene.
How is muscular dystrophy treated?
There isn't a cure for muscular dystrophy. But there are treatments that can help your child stay as active as possible.
The goal of treatment is to manage your child's symptoms and slow the progress of the disease. Treatment options may include:
- Medicines such as a steroid.
- Medicines to help prevent heart problems.
- Physical and occupational therapy.
- Respiratory and speech therapy.
- Devices to support the muscles, such as leg braces.
- Surgery to correct problems with the skeleton or to lengthen tendons.
- Counseling to help with mental health.
As your child's condition changes over time, talk with your doctor about whether changes in diet or exercise may also be a good idea.
There may also be clinical trials available that are testing new treatments. You can ask your doctor if there are any that you should think about.
When to Call
Muscular dystrophy in children: When to call
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 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 if:
- Your child strains when having a bowel movement and seems to be constipated.
- Your child show signs of depression or anxiety.
- You want to learn more about muscular dystrophy.
How can you care for your child who has muscular dystrophy?
- 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 physical therapist 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 if you think your child is having a problem with any 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 the doctor 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 their 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 them.
- Give your child some responsibility for their own 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 counseling.
- Be realistic. Do the best you can, and know that you can't control everything.
Copyrighted material adapted with permission from Healthwise, Incorporated. This information does not replace the advice of a doctor.