Down Syndrome

I have a 4 year old daughter who has Down Syndrome. Someone told me that the facial features and mental retardation will go away if I put her on a certain diet. Please tell me more about this. A Concerned Parent, McCormick, SC

Down syndrome (DS) is the most common genetic cause of mental retardation. One out of every 650 liveborn babies has this condition. DS is caused by an extra number 21 chromosome being present in every cell of the body. It is not completely understood how this extra genetic material produces the distinctive physical features, birth defects, or mental retardation associated with DS. There is no known cure for DS.

The use of nutritional supplements for the treatment of individuals with DS has become popular in recent years. These supplements are usually a combination of vitamins, minerals, amino acids, and enzymes. The basis of these nutritional therapies is the observation of parents and physicians. Unfortunately, there have been no objective, scientific studies completed regarding the use of these nutritional supplements to "treat" individuals with DS. Some aspects of these therapies appear to be sensible but have not been rigorously studied. It is important to note that there are also no scientific studies addressing the long term effects of the chronic use of these dietary supplements. Many nutritional supplements, in large amounts, can cause harmful side effects.

The Greenwood Genetic Center (GGC) recommends that parents use extreme caution before beginning a nutritional supplementation program. A position statement from the National Down Syndrome Society includes "….despite the large sums of money which concerned parents have spent for such treatments, in the hope that the conditions their child with DS would be bettered, there is no evidence that any such benefit has been produced." Until objective studies are done, the GGC cannot endorse the use of these diets but remains open minded as more scientific data is gathered concerning the use of these alternative therapies.

The Greenwood Genetic Center does emphasize our support for therapies which have proven to be beneficial for individuals with DS: physical therapy, occupational therapy, and speech therapy as well as early intervention. The GGC's monthly Down Syndrome Clinic was established in 1996 to address the specific health care needs of individuals with DS and to assist and support their families. We have served over forty families thus far in our clinic.