WHAT ABOUT DIET?

Parents often ask, "What should my child eat?" and "Is there some special diet that will change the course of this disease?"

So far, there are no known dietary modifications that directly affect the progression of DMD, although many have been tried.

In his long list of substances that have been formally tested and found ineffective in slowing the course of DMD, Dr. Emery mentions several nutritional supplements, including amino acids (the components of proteins), coenzyme Q, vitamin B6, vitamin E and zinc. Many more have been tried, of course, on an informal basis.

It should be said, however, that much general research is now being done on the effects of vitamins, minerals and other nutrients on general health and the health of muscles, nerves and bones. Some doctors who treat DMD recommend antioxidant vitamins such as E and C and green, leafy vegetables on the theory that, over time, these substances may help "clean up" toxic byproducts (free radicals) from degenerated muscle tissue. A full discussion of this fast-moving field is beyond the scope of this guide, but families are encouraged to follow reputable sources of information about nutrition.

For now, most doctors recommend a diet of the same general composition you'd use for any growing boy, but with a few modifications.

If the boy uses a power wheelchair much of the time and isn't very active, his caloric requirements may be so low that even a "normal" diet can lead to obesity. A study of boys with DMD done in 1984 showed that even strict dieting for weight reduction had no harmful effects on the muscles, so most doctors don't hesitate to recommend a diet moderately reduced in calories.

A combination of immobility and weak abdominal muscles can also lead to severe constipation, so the diet should be high in fluid and fiber. Fresh fruits and vegetables not only provide fiber, but provide good general nutrition and satisfy hunger.

It's very hard for some parents to deny their children food treats, such as candy and ice cream. The key is to use such treats in moderation; everyone needs a piece of chocolate or an ice cream once in a while, but no one needs these every day. Of course, if food is all the child cares about, that's something that needs to be changed.

Through your MDA clinic, you can get a referral to see the nutritionist at your medical center. Also of use are reputable weight control groups such as Weight Watchers and programs run by health maintenance organizations.

Special Needs

The child who's taking prednisone may need even more stringent calorie restriction than other children with DMD and will probably need a sodium-restricted diet as well.

The boy with severe heart problems may also need a sodium-restricted diet.

You'll probably need help from a nutritionist or dietitian to manage these special diets, at least in the beginning.

Next... Are There Medications to Treat DMD?