At present, there’s no cure for most neuromuscular diseases — although the day is rapidly approaching when genetic and drug therapies will change that situation. For immune-mediated disorders, drug therapies can be very effective for treating or reversing symptoms (see Neuromuscular Disease Descriptions).
Medical interventions have increased the life span and improved quality of life for many medically fragile children. These interventions focus on treating or delaying symptoms, enhancing physical mobility and social interactions, and preventing heart and lung complications.
Some common interventions include:
When the muscle layer of the heart weakens and doesn’t pump effectively (cardiomyopathy), children may experience fatigue and lethargy, swelling in the legs and feet, cold extremities, digestive problems and other symptoms of poor circulation. Drug treatments available through a cardiologist may enhance heart muscle function. Some children benefit from a pacemaker, and some may even undergo a heart transplant.
When the muscles used in swallowing and chewing are weakened, there’s a risk of dehydration, malnutrition, choking or respiratory infections caused by inhaling food or liquid into the lungs (aspiration).
Keeping the body flexible, upright and mobile combats some of the side effects of neuromuscular disease. Such therapy also benefits academic performance by allowing children to do more and stay healthier. Your student’s IEP may specify that a certain time must be set aside each day for him or her to work with a physical or occupational therapist. PT or OT interventions include:
Although only a few drugs are approved for use against the effects of neuromuscular disease, ongoing clinical trials are constantly seeking to expand that number.
One medication that has proven effective in some neuromuscular diseases is prednisone. This steroid may be taken by children with Duchenne muscular dystrophy (DMD) and some other neuromuscular conditions because it slows the loss of muscle function and increases muscle strength, providing for a few more months to a few more years of leg and arm use.
Prednisone’s undesirable side effects include weight gain, loss of bone mass, thinning of the skin, raised blood pressure and blood sugar, depression, and difficulties with thinking, sleeping and controlling behavior.
It’s important to carefully monitor the diets of children on prednisone, and to be aware of its behavioral effects.
When weak respiratory muscles make it difficult to effectively move air in and out of the lungs, children may experience headaches, mental dullness, difficulty concentrating or staying awake, and nightmares. In addition, weak chest muscles make it hard to cough effectively, leaving the lungs more susceptible to infection. In some children, a simple cold can rapidly progress into pneumonia.
After scoliosis surgery, students sit much straighter and have fewer problems with breathing. They often require a new wheelchair and adjustments in classroom desk height. Unfortunately, some abilities, such as reaching, may be negatively affected by this surgery.