Hesperian Health Guides
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- Getting fat is a common problem in children with dystrophy. The child needs to eat a healthy balanced diet. But take care not to let him eat too much—especially sweet things. Extra body weight will make walking, breathing, and other activities more difficult for his weakening body, and will make it harder for family members to lift him.
- Constipation (hard, difficult stools) may become a problem. Drinking lots of liquid helps. So does eating fruits and vegetables, and foods with lots of fiber.
- Spinal curve can become severe (see picture of Tito drawing, below). A corset or body brace may help hold the child in a straighter position so he can use his arms better and breathe better.
- Arm weakness in time may become a problem for self-care and eating.
pin to let it tip up and down
post put into holes in base
heavy wood base
You can make a simple aid to help get the hand to the mouth. See more ideas of aids for eating and reaching.
It is important to help the child gain interests and skills that he can continue to develop even as he becomes very weak. He should stay in school, if possible, even when he has to go in a wheelchair.
Learning to draw and paint can be fulfilling. In Los Pargos, an organization of families of disabled children in Mexico, 4 brothers with muscular dystrophy have all become very good artists. Their paintings have won prizes in contests and are sold to raise money for the group. The best artist of all was the oldest brother, Tito. He took pride in his paintings and enjoyed teaching the other children. He did one of his best paintings, a sea turtle with wings, a week before he died, at age 17.
PREVENTION: The only way to prevent muscular dystrophy is for women who may have the dystrophy gene not to have children. This mostly means sisters of affected boys and close relatives on the mother’s side. Tests to find out if you have the ‘gene’ that causes muscular dystrophy may be available, but are expensive. If you have one son with dystrophy, other sons will be likely to have it too.
The type of dystrophy just described—also called progressive, pseudohypertrophic, or Duchenne’s muscular dystrophy—is the most common. But there are 30 different types of muscular dystrophy and muscular atrophy. All start little by little: some in early childhood, some between ages 13 to 19, and some in adults. All steadily get worse. Some types, however, almost stop after a certain age, and the person may live to active old age, although disabled.