Muscular dystrophy

There are different types of muscular dystrophy (MD). Muscular dystrophies are rare inherited diseases. They cause loss of muscle along with weakness that gets worse over time. There are different types. The most common type causes symptoms early in life, often between the ages of 2 and 5. Other types show up later.

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.

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.

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.

• 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.