About this topic
Duchenne muscular dystrophy is an illness where the muscles in the body start to waste and become weak. It is an illness that is passed on from your parents. It gets worse over time. This is because the muscles stop making a protein called dystrophin. This protein is very important in muscle strength and movement. Duchenne muscular dystrophy is passed down through families. It most often affects boys. The signs include weakness that is often seen at age 2 to 3. Children have trouble running, jumping, and walking up steps. They may complain of leg pain. They may need a wheelchair by age 12. The heart muscle may also be affected by the disease and become weak. Treatment is focused on the signs. Broken bones happen because of falls. ‚
What care is needed at home?
- Ask your doctor what you need to do when you go home. Make sure you ask questions if you do not understand what the doctor says. This way you will know what you need to do to care for your child.
- Ask your childs doctor about what to expect.
- Make sure to give all the drugs ordered by the doctor. Encourage your child to use any tools the doctor gave to help prevent falls. If leg or arm braces, a cane, or wheelchair were ordered, help your child learn to use them correctly.
- Clear the floor of rugs, mats, and any other tripping hazards. Place nonslip mats near stairs and doors.
- If you child needs a wheelchair, there may be some things you can do to get your home ready. There are removable ramps that can be used for the front door. Move furniture that may get in the way of a wheelchair. Wheelchairs are most often 24 to 27 inches (61 centimeters to 68 centimeters) wide.
What follow-up care is needed?
- Your childs condition needs close monitoring. Your doctor may ask you to make visits to the office to check on your child's progress. Be sure to keep these visits.
- Your doctor will tell you if your child needs other tests.
- The doctor will send your child to a physical therapist. The therapists will help your child be as active as possible. They may also teach your child how to use the walking devices.
- The doctor may send your child to a psychologist or psychiatrist to help your child cope with the illness.
What drugs may be needed?
The doctor may order drugs to increase muscle strength. ‚
Will physical activity be limited?
- Your childs movements will be greatly limited. Your child will have problems with walking, running, getting up from the floor, and even going from one side of the house to the other.
- After therapy, let your child practice what was learned at home. Encourage your child by giving lots of praise.
- Encourage your child to move and exercise while able. Join your child during exercises. Ask the doctor what amount and type of exercise is best for your child.
What changes to diet are needed?
- Give your child a low-calorie, low-salt diet. This will prevent weight gain. Gaining weight may make it harder for the legs to carry your childs weight.
- Give your child lots of fruits and veggies. These foods are high in fiber and can help prevent hard stools.
What problems could happen?
What can be done to prevent this health problem?
- There is no way to prevent this illness.
- If you or any of your close relatives have muscular dystrophy, ask if you could pass it on to other children.
- If you have a family member who has muscular dystrophy, get your child checked if you see any signs of muscle weakness.
When do I need to call the doctor?
- Your child has more weakness
- Your child has trouble breathing
- Your child has fallen
- A big weight gain
- Swelling in your childs legs or belly
- Cough that does not go away
Helpful tips
- Join a support group. People who have the same illness may make coping with the changes easier.
- Tell your family about your childs illness and how they can help.
- Tell your child about the illness.
Teach Back: Helping You Understand
The Teach Back Method helps you understand the information we are giving you about your child. The idea is simple. After talking with the staff, tell them in your own words what you were just told. This helps to make sure the staff has covered each thing clearly. It also helps to explain things that may have been a bit confusing. Before going home, make sure you are able to do these: ‚
- I can tell you about my childs condition.
- I can tell you what changes I need to make with my child's diet, drugs, or activities.
- I can tell you what I will do if my child has more weakness, trouble breathing, swelling, or has fallen.
Where can I learn more?
Muscular Dystrophy Association ‚
http://www.mda.org/disease/duchenne-muscular-dystrophy ‚
National Human Genome Research Institute ‚
http://www.genome.gov/19518854 ‚
National Organization for Rare Disorders ‚
http://www.rarediseases.org/rare-disease-information/rare-diseases/byID/37/viewAbstract ‚
Consumer Information Use and Disclaimer
This information is not specific medical advice and does not replace information you receive from your health care provider. This is only a brief summary of general information. It does NOT include all information about conditions, illnesses, injuries, tests, procedures, treatments, therapies, discharge instructions or life-style choices that may apply to you. You must talk with your health care provider for complete information about your health and treatment options. This information should not be used to decide whether or not to accept your health care providers advice, instructions or recommendations. Only your health care provider has the knowledge and training to provide advice that is right for you. ‚
Copyright
Copyright ‚ © 2015 Clinical Drug Information, LLC and Lexi-Comp, Inc. ‚