Vitamin Therapy

STATEMENT ON THE USE OF TARGETED NUTRITIONAL INTERVENTIONS

Down Syndrome International does not recommend the use of any treatments or substances which purport to improve the function of individuals with Down syndrome that have not been scientifically evaluated for both safety and efficacy.

None of the products currently marketed as Targeted Nutritional Interventions, or similar, in any country, have been shown to be either safe or effective. None have been subjected to appropriate double-blind trials. Little is known about the side-effects of these formulas and the levels of some ingredients could be dangerous, especially for infants and small children.

Many of the proponents of such formulas base their arguments for them on dubious interpretations of some of the research literature on the genetic and biochemical effects of Down syndrome. Some also state or imply that Down syndrome is a degenerative disease for which their treatment may be effective in halting degeneration. Down syndrome is not a degenerative disease. The term is usually used for conditions in which development is arrested and then declines. Babies and children with Down syndrome make steady progress in their development, although more slowly than most other children.

Down Syndrome International supports scientific advances and the search for effective treatments for any of the medical conditions or genetic or biochemical differences associated with Down syndrome. By developing a range of publications and information resources, in collaboration with leading experts and organisations that are committed to the well being of individuals with Down syndrome worldwide, DSI seeks to ensure that parents have access to objective information on these issues.

Further information, references and discussion on this issue can be found at:

http://www.ds-health.com and a review article entitled ‘Multinutrient formulas and other substances as therapies for Down syndrome: an overview’ by Ben Sacks and Frank Buckley can be found at http://www.down-syndrome.net/library/periodicals/dsnu/01/2/070/

Professor Sue Buckley

President: Down Syndrome International

28th September 2001

!PRESS RELEASE! by the Down Syndrome Association UK

INSTITUTE OF CHILD HEALTH RELEASES PRELIMINARY RESULTS OF VITAMINS AND MINERALS RESEARCH 16/10/2006

The Institute of Child Health and the Peninsula Medical School, funded by the Downs Syndrome Association, the Down Syndrome Research Foundation and the Lejeune Clinic, embarked on research to find out whether the development and health of young children with Downs syndrome would be improved by taking certain vitamins and mineral supplements. Although they are not yet able to publish the full report from the trial, they have released preliminary results.

156 infants under 7 months were split into four groups. The first group were given the recommended daily dose of antioxidants, the second group the recommended daily dose of folinic acid. The third group took both antioxidants and folinic acid and the fourth were given a placebo. None of the families involved in the trial knew which group they had been assigned to. Of those 156 infants, 138 completed the trial. 18 children had stopped taking the supplementation, mainly due to side effects such as vomiting.

After 18 months the childrens psychomotor development, speech and language development, growth and general health were assessed. No positive effect on any of these four factors was found by taking anti-oxidants, folinic acid or a combination of the two.

Final biochemical results (which are necessary to explain the researchers mechanisms) have been delayed due to a worldwide shortage of the reagents used to measure oxidative stress. This has delayed final publication of the trial results in a scientific journal, but the biochemical findings will not change the key results explained above.

Carol Boys, Chief Executive of the Downs Syndrome Association, said;

'We would of course welcome any supplementation that was clinically proven to be beneficial to the health and development of children with Downs syndrome. We are not pleased that these supplementations have been shown not to make any difference, but we are glad that the question has been answered. We are also delighted that the researchers have been able to, and will continue to, use the sizeable cohort of babies to develop other important areas of research. The team will soon be publishing the results of research conducted into families experiences of being awarded Disability Living Allowance. They are also looking into language development and the use of signing, and other patterns of provision of health and social services.'

For further information, please contact Marie Benton, Communications Manager at the DSA: E-mail marie.benton@downs-syndrome.org.uk Tel: 0845 230 0372