By David S. Smith MD, Medical director of the Down Syndrome Clinic of Wisconsin
There has been a lot of interest lately in many nutritional therapies reportedly of benefit to people with Down syndrome. Some of these therapies are relatively new and others have been around for awhile. Some of the more widely talked about supplements are Nutrivene D, MSB, and HAP Caps. Some of these therapies have been combined with Piracetam or thyroid medications. Historically, the interest in nutritional supplementation has come and gone and now come again.
The proponents claim the supplements will improve behavior, learning and even appearance. They claim there are known deficiencies in people with Down syndrome and these deficiencies can be demonstrated by laboratory tests. There is no evidence to show these therapies are beneficial. There are some studies, for example, that show zinc levels are low and that replacing the zinc has a beneficial effect. The studies are in Italian, however, and so I cannot comment on their quality. So far, I have not found any zinc deficiencies in patients I have tested. On the other hand, there is a recent study that shows that the amino acid levels in the blood of people with Down syndrome are not deficient. There was also a study supported by NADS, a parent organization of the Chicago area, that showed no benefit of supplementation with a special vitamin formula that is similar to the present-day HAP caps of Dr. Warner. What the study did show is there does seem to be improvement both with the vitamin formula as well as with the placebo. This suggests that our expectations of the outcome of therapy affects the results. Furthermore, learning and developmental progress are stepwise processes and don’t always follow a smooth curve.
Although generally the therapies are felt to be safe, there are potential side effects if very large doses are used, particularly of the fat soluble vitamins (Vitamins A, D, E, and K) as well as some minerals. For example, zinc at 20 times the typical dose has been shown to decrease the infection-fighting cells of the blood and also decreases copper levels in the blood. Chromium in large doses is linked to cancer. Beta-carotenes and anti-oxidants in improper amounts and proportions may increase cancer and heart disease.
There are many issues involved. What is true deficiency and how reliable is the testing? In some cases, the laboratories not only do the testing, but they also sell the supplements. Does a “low” level necessarily mean that the function is abnormal? What does a “high” level mean? Does supplementation correct a deficiency? Sometimes giving a substance by mouth does not always lead to a change in the blood level or the cellular level of that substance. And if you do correct the deficiency, does that have an effect upon the function of the person? The real issue is just that, does putting a supplement into the mouth cause a beneficial effect for the person? The human body is a complex organism that does not simply respond to simple biochemical measures. What happens to cells in a test tube does not always translate into what happens to the person.
My personal observations are that individuals who use supplements are not significantly different than those without supplementation. Some people have stopped the therapies because of side effects or because they noticed no difference. They can also be quite expensive for those with limited income.
This doesn’t mean that these therapies should be ignored. I think that any promising therapies should be studied. However, they should be studied in an unbiased manner and with well-designed, controlled studies that directly compare treatment with no treatment.
As a parent, a response to waiting for these studies is? “My child is here now. By the time these studies are done, it may be too late.” This is true. There is, however, no reasonably good evidence to show they are effective compared to those things that we know are available. My recommendation is to take full advantage of the things we know are effective. Love and support and raising children with Down syndrome in an environment in which they are included in family and community activities. Take advantage of good educational practices and stay involved with their schooling. Speech and language therapy, in particular, is important, since communication is a valuable tool that will allow them to learn, work and be independent. Lastly, good health care as outlined by the Guidelines for Health Care for Individuals with Down syndrome. Ensure that your child has every opportunity to learn and to be involved. If there are concerns about the adequacies of diet, a multiple vitamin is an option. If there are other concerns, dietary counseling may be useful as well.
There are a lot of claims and misinformation out there. Particularly, in an age where communication is so rapid, information spreads quickly. If it sounds too good to be true, it probably is. Professionals, such as myself, who are members of the Down Syndrome Medical Interest Group and Directors of clinics for people with Down syndrome are here to help you and your child.