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Health Care Guidelines For Individuals With Down Syndrome -
Alternative Therapies

Unconventional and Controversial ("Alternative") Therapies

Over the years, a number of controversial treatments of therapies have been proposed for persons with Down syndrome. Sometimes, such modalities are referred to as "alternative" therapies, meaning that they are outside of the mainstream of traditional medicine. Often the claims made in support of such treatments are similar: that the treatment will result in improved intellectual function, alter physical or facial appearance, decrease infections and generally improve the well-being of the child with Down syndrome. Nutritional supplements including vitamins, minerals, amino acids, enzymes and hormones in various combinations represent one form of therapy. There are a number of well-controlled scientific studies that have failed to show any benefit from megadoses of vitamins and minerals. Supplemental zinc and/or selenium may have an effect on immune function or susceptibility to infection, but studies thus far have been inconclusive. Sicca cell treatment (also called cell therapy) consists of injections of freeze-dried fetal animal cells, and has not been shown to be of any benefit. It also has potential side effects of allergic reactions and the risk of the transmission of slow virus infections.

There has been much interest generated in 1995 in the use of a Piracetam, a drug that is classified as a cerebral stimulant or nootropic. It has been tried in adults with Alzheimer disease without any benefit. It was shown to improve the reading abilities of typical boys with dyslexia. Piracetam is not approved by the Federal Drug Administration for use in the United States except as an orphan drug for myoclonus. At the time of its initial popularity there had been no scientific studies published reporting its use in children with Down syndrome. DSMIG has expressed concerns about its use in young children in the absence of studies demonstrating its safety. The first double-blind placebo-controlled crossover study of Piracetam, conducted by Lobaugh and her colleagues, was reported at the Pediatric Academic Societies Annual Meeting in San Francisco CA on May 3, 1999. Twenty children with DS were studied. There was no improvement in either cognitive or behavioral measures. There were significant central nervous system side effects noted which led the researchers to conclude that "it is unlikely that larger doses can be tolerated." [See References, Section Y, Lobaugh et al.]

Facilitated communication is a technique whereby a person known as a "facilitator" assists a person by providing support to the hand or arm to enable them to communicate using some type of communication keyboard. Although there are claims of usefulness for persons with many types of disabilities, a number of carefully designed studies have not established this as a valid treatment.

Some parents choose to include chiropractic care in the spectrum of interventions for their children with Down syndrome. The scope of the chiropractic services offered to children includes musculoskeletal manipulations, recommendations for supplemental vitamins, and agents purported to improve immunologic function. The range of conditions claimed to be amenable to chiropractic treatment is broad and includes constipation, gastroesophageal reflux, and ear infections. Individuals with Down syndrome have ligamentous laxity and therefore may be at increased risk of injury from cervical-spinal manipulation. Parents should be very cautious when considering such treatment, especially if it is promoted in lieu of immunizations, antibiotics for infections or hormone replacement for endocrine deficiency.

The treatments mentioned in this section are only a few of the approaches that have been tried or claimed to pose some benefit to children with Down syndrome. So far, there are no alternative medical therapies that have been scientifically documented to result in a significant improvement in the development and health of children with Down syndrome. Recently, members of DSMIG have received many anecdotal reports of significant and satisfying changes in a wide variety of functional areas (eg. muscle tone, sleep, general health, etc.) following the institution of the use of nutritional supplements. We are carefully evaluating these reports in order to be able to formulate a thoughtful plan to address the questions voiced by the parents of children and adults with Down syndrome about the value of these supplements.

Facial plastic surgery has been promoted in a number of countries, especially Israel, as a means of altering some of the physical features of Down syndrome. This is particularly controversial when performed on young children, since the facial features naturally undergo changes into adolescence. It is claimed that children are better accepted by society. This is not a medically indicated procedure, and most health insurance will not reimburse the surgeon or hospital. Tongue reduction surgery has also been promoted to improve esthetic appearance. Often this is recommended under the pretext of improving speech intelligibility. Several studies have demonstrated that this surgery has no effect on speech/language abilities nor the articulation of sounds. [See References, Section Y.]

Reprinted with permission from Down Syndrome Quarterly, Volume 4, Number 3, September, 1999

Healthwatch for Persons with Down Syndrome

Neonatal - Birth to Two Months
Infancy - Two Months to Twelve Months
Childhood - One Year to Twelve Years
Adolescence - Twelve Years to Eighteen Years
Adults - Over Eighteen Years

Elaboration of Recommendations
Alternative and Controversial Therapies

Reprint Information

This page last updated on 15 April 2008.

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Thomas and Michel Paul - Email: tom.and.michel AT gmail DOT com