Congenital myopathies have no cure, however, a subtype called central core disease has an effective treatment.
Your child’s doctor can recommend supportive treatments such as orthopedic treatments, as well as physical, occupational or speech therapy help to lengthen life, preserve muscle activity and increase functional ability.
Treatment for congenital myopathies may include:
Airway widening drug salbutamol may help to reduce weakness in a subtype of congenital myopathies, central core disease. Other medications may be given to treat symptoms of some myopathies such as antibiotics can be administered early to treat respiratory infections, if any.
Nutritional and respiratory support
As the disease worsens with time, your child can be given nutritional or respiratory support (noninvasive ventilation).
Orthopedic treatments and surgery
Orthopedic support devices may help to correct or improve scoliosis, deformed foot. If they do not work, you may consider orthopedic surgery.
Physical, occupational or speech therapy
These therapies help to rehabilitate your child while reducing dependency as much as possible.
Follow-up care includes tests to measure muscle function, cardiopulmonary function.
6 Lifestyle and Coping
Lifestyle modifications are necessary for your child in order to cope with congenital myopathies.
Having to see your child in such difficulty can be heartbreaking. Not much can be done to help your child but a positive turn of mind and stress management can help you better manage the situation.
Here are a few things that you can do to help your ailing child:
Restrict your child’s calorie if s/he has severe mobility problems but DO NOT forget to provide essential nutrients.
Take your child for some exercises. Regular exercise may help your child perform normal activities.
Talk to a genetic counselor. Ask how this genetic defect can affect your future pregnancies or if there are any ways to prevent such condition in future.
7 Risks and Complications
There are several risks and complications associated with congenital myopathies.
A family history
Malignant hyperthermia (general anesthetic-induced rapid rise in body temperature and severe muscle contractions )
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