Alternative therapies include a wide range of theories and treatment practices. In the United States, an alternative therapy is any therapy that is not considered traditional and is typically not taught in medical school.
What Kind of Alternative Therapies are Available?
Various traditional and alternative treatment methods for Down syndrome have been popular over the years including the use of pituitary extract, glutamic acid, thyroid hormone, 5-hydroxytryptophan, dimethyl sulfoxide (DMSO), dihydroepiandosterone, sicca cell therapy and growth hormone.
Some treatments, such as sicca cell therapy, have proven to be dangerous. More recently, the orthomolecular approach to treatment using various combinations of vitamins, minerals, enzymes and amino acids have been revisited. Generally, alternative therapies for Down syndrome fall in and out of popularity through the years.
What Kinds of Claims Are Made About Alternative Therapies?
Many alternative therapies, particularly those termed “holistic,” are aimed at treating the body as a whole rather than treating a disease or a symptom. Most proponents of these therapies have not made claims for people with Down syndrome that have been any different from the claims they have made for the general population. However, some therapies have been claimed to improve motor and cognitive functions as well as growth and overall activity specifically in persons with Down syndrome. Some therapies have even been claimed to change some of the physical features of Down syndrome to a more “normalized” appearance and to reverse intellectual disability.
Have Any of These Claims Been Scientifically Proven?
Although varied treatments have been in use for many years, available research studies are often limited. Observation and experience are often the first step in the research process. However, while anecdotal successes can be exciting and can increase popular interest in a particular therapy, rigorous scientific study is still the benchmark by which treatments are held as to their effectiveness and safety. Especially as more and more physicians in the US are becoming familiar with alternative and complementary treatments, parents should discuss any potential new treatment with their doctors to learn more about any known benefits and side effects.
Is the Use of Alternative Therapies Recommended?
NDSS and other organizations interested in the welfare of persons with Down syndrome, such as the National Down Syndrome Congress, the Down Syndrome Medical Interest Group and the American College of Medical Genetics, can only recommend treatments and therapies for individuals with Down syndrome that have undergone thorough scientific study. This includes large, randomized, double-blind research studies that evaluate the safety and efficacy of the treatment in question. These organizations do not aim to discourage parents from making decisions they feel are right for their child. However, they feel that benefits, risks and side effects must be clearly shown before they can recommend any of the treatments in good conscience. Good research studies take time and money. NDSS has encouraged the National Institute of Child Health and Human Development to consider this type of research. The National Institutes of Health have created a separate division, the National Center for Complementary and Alternative Medicine, to provide information on alternative therapies to the general public and to begin carefully evaluating such treatments.
How Can I Sort Through This Information? What Facts Should I Consider?
In talking with doctors and other parents and guardians, caregivers should:
- Think about the nature of the research data and whether it came out of a large, controlled, replicable study.
- Ask for copies of research studies that support the therapy’s claims.
- Ask whether the claims are realistic.
- Ask if the therapy is documented to be safe and effective.
- Weigh possible side effects against the benefits of the therapy.
- Evaluate the cost and time involvement of the therapy.
- Ask about the background of the person promoting the therapy.
- Ask about the practitioners’ qualifications and learn whether they have been certified by a professional organization.
- Examine whether proponents of the therapy have a financial interest in it.
- Speak with other families about their experiences and opinions.
- Think about negative stereotypes in our society and why we often feel the need to “fix” people with Down syndrome.
- Be familiar with the position statements on certain treatments by the National Down Syndrome Society and other national organizations.
- Share information you have gathered with your doctor, and work with him or her to determine the best treatment plan.
- Inquire about the experiences of other professionals who are familiar with the treatment.
- Consider whether both parents are in agreement