MUSCULAR DYSTROPHY |
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DESCRIPTION
Muscular dystrophy is a gradual deterioration of the body's muscles, leading to increasing difficulty in walking and moving. The muscular system--especially of the extremities, pelvis, and hips -- is involved. Different types of muscular dystrophy exist, depending on the exact genes involved. They affect different areas of the body, such as the shoulders, hips, or face. Muscular dystrophy affects male children, usually between ages 5 and 12.
Appropriate health care includes:
Home care.
Physician's monitoring of general condition and medications.
Psychotherapy or counseling for the child and the family to learn ways to cope with the child's disability and to adjust socially.
Physical therapy.
Nursing-home care, if the patient's needs exceed the resources available at home.
SIGNS & SYMPTOMS
Early symptoms: weakness; ducklike gait; falling, with difficulty getting up; muscles that appear larger and stronger--but are weaker--than normal.
Late symptoms: muscle deterioration severe enough to require confinement to a wheelchair by age 9 to 12; severe distortion of the child's body; recurrent respiratory infections.
CAUSES
Inherited. Muscular dystrophy is a genetic abnormality. It is carried by a female who does not have the disease; she passes it to male children. When a female carrier marries a male who does not carry the gene, half the male children will inherit the condition.
RISK FACTORS
Family history of muscular dystrophy.
PREVENTING COMPLICATIONS OR RECURRENCEIf you have a family history of muscular dystrophy:
Obtain genetic counseling prior to starting a family.
If you are pregnant, consider amniocentesis (See Glossary) to determine whether the fetus is male and whether the disorder is present.
BASIC INFORMATION
MEDICAL TESTS
Your own observation of symptoms.
Medical history and physical exam by a doctor.
Laboratory studies of muscle enzymes in the child's blood.
Muscle biopsy (See Glossary).
POSSIBLE COMPLICATIONS
Frequent fractures or injuries from falls.
Spinal curvature caused by weakened muscles of the child's spine.
Pneumonia caused by weakened chest muscles and a diminished cough response.
Muscle shortening (contractures).
Pressure sores.
PROBABLE OUTCOME
This condition is currently considered incurable. Children with this condition rarely reach adulthood. Scientific research into causes and treatment continues, so there is hope for better treatment and increased life expectancy for your child.
TREATMENT
HOME CARE
Contact your local chapter of the Muscular Dystrophy Association for help.
Your child should learn deep-breathing techniques. Your doctor can provide instructions.
Your child should stay active in school as long as possible.
MEDICATION
No medicine can cure this condition. Your doctor may prescribe:
Stool softeners to prevent constipation.
Medications appropriate for complications.
See Medications section for information regarding medicines your doctor may prescribe.
ACTIVITY
Your child should be as physically and mentally active as possible. Many devices can help overcome handicaps caused by weakness. Your doctor will tell you if braces will help.
If the child cannot voluntarily move muscle groups, family members or a visiting nurse should massage and passively exercise them to prevent contractures. Long periods of inactivity or bed rest should be avoided.
DIET & FLUIDS
No special diet. Overweight should be avoided, because it adds stress to weakened muscles.
OK TO GO TO SCHOOL?Yes, so long as your child is able.
CALL YOUR DOCTOR IF
You detect symptoms of muscular dystrophy in your child.
Infection, especially of the lung, occurs after diagnosis. Symptoms include fever, cough, and chest pain.
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