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 of the alternative therapies, particularly those termed "holistic," are aimed at treating the body as a whole, rather than as a disease or a symptom. Most 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 claimed to improve motor and cognitive functions as well as growth and overall activity specifically in persons with Down syndrome. Some have 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 experiences are often the first step in the research process. However, while anecdotal successes can be exciting and 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. 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 are not discouraging 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. The difficulty is that 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 also created a separate division, the National Center for Complementary and Alternative Medicine, to provide information on alternative therapies to the general public and begin carefully evaluating such treatments.
How Can I Sort Through This Information? What Facts Should I Consider?
In talking with your doctor or other parents, think and ask about the following:
- The nature of the research data and large, controlled, replicable studies to measure the true benefits and risks.
- Think about and compare the risks, benefits and costs (if known).
- Give your doctors the benefit of the doubt if they are skeptical at first. Remember the medical community has an obligation to "do no harm" and to carefully evaluate any potential new treatment. You should share some of the information you have gathered and learned with your doctor so that together you can determine the best treatment plan.
- Be familiar with the position statements on certain treatments by the National Down Syndrome Society and other national organizations.
- Think about negative stereotypes in our society and why we often feel the need to "fix" the person with Down syndrome.
- Is the therapy documented to be safe and effective?
- Ask for copies of research studies that support the therapy's claims.
- Are the claims realistic?
- What is the background of the person promoting the therapy?
- What are the practitioners' qualifications, are they certified by a professional organization?
- Does the person have a financial interest in the therapy?
- What is the experience of other professionals who are familiar with the treatment?
- Is the therapy expensive?
- What are other families' experiences and opinions?
- What are the risks or side effects? Most therapies that have an effect also have a side effect. These side effects should be weighed against the benefits.
- Does the treatment make sense for your family in terms of time involvement and costs?
- Do both parents agree with the treatment?
- National Center for Complementary and Alternative Medicine
Defines, through rigorous scientific investigation, the usefulness and safety of complementary and alternative medicine interventions and their roles in improving health and health care