The Effects of Supplementation on Children with Down Syndrome: Evaluation of Questionnaires Filled Out by Parents

Dr. Marie Peeters-Ney
Study conducted by Nutri-Chem
  Reprinted with the permission of Roger Biddle

Many parents wonder what has happened with the questionnaires they filled out for their child before and after receiving supplementation from Nutri-Chem. We can now give you some of the results.

Before beginning I would like to thank all the parents who participated and thank them for the time and effort they put into filling out the many pages of the questionnaire. I also want to thank you for the pictures of beautiful children. One could not have a 'most beautiful child' contest because they are all so wonderful. A special thanks to parents who included evaluations, laboratory reports and other useful information.

Ninety-five parents participated in this study. Thirty-four parents filled out both a before treatment questionnaire as well as one after several months of treatment. Sixty-one parents only filled out one questionnaire, seventeen of which were post treatment questionnaires. There were twenty-two children in the infants to age one year category (of whom eleven had both before and after evaluations), thirty one in the group aged one year to three years (twelve of whom had before and after treatment evaluations). In the children aged from three to five years category there were eighteen children (of whom only four had before and after questionnaires), seventeen in the children aged five to ten ears group (five of whom had both before and after questionnaires filled out) and seven in the ten to twenty years age group (two persons filled out both questionnaires).

In this study there were fifty five boys and forty girls. Thirty-eight children had no associated congenital anomalies. Forty-two children had a cardiac defect requiring cardiac surgery in thirty-nine of them. Nine children had heart murmurs, six children had congenital gastrointestinal anomalies, three children had thyroid problems at birth. There was one child who had had leukemia, one child had congenital cataracts and one had congenital dislocated hips. These figures are in keeping with the frequency and types of anomalies associated with Down syndrome.

It is of note that the average maternal age at birth was 32.1 years, with a range from 19 years old to 45 years old. Six mothers had prenatal diagnosis and had known before the birth of their child that this one suffered from Down syndrome. These two findings warrant a comment. Through the world it has been reported that there is an increase in the number of children with Down syndrome who are born to mothers who are in an age group not associated with an increased risk of having a child with Down syndrome. It has always been taught that there is an increased risk of conceiving a child with Down syndrome in very young mothers (before the age of 18) or in mothers over the age of 40. It is for this reason that prenatal diagnosis is recommended to mothers over the age of 38 years of age. The findings in this study confirm a global trend and certainly warrant that some study be done on the environmental factors which may be responsible. The second comment pertains to the parents who knew before the birth of their child that he or she had trisomy 21. The fact that these children were born is a tribute and a testimony to people to believe that children with Down syndrome are children. The difference being that they require special love, care and support.

When results of the study were analyzed there were many significant findings. There was a significant decrease in the number of infections, indeed the number of infectious episodes was decreased by half. In the group in which both before and after treatment questionnaires had been filled out 65% of parents noted significant improvements in their child: health, better immune system, change in body structure, better concentration, longer attention span, better interactions, etc. On analysis of the visual analogue scale there were physical improvements. Because the study is ongoing we cannot discuss these at this time. Commenting on them could influence the way parents answer their questionnaire and introduce a biases. There were almost no side effects attributed to the supplementation. In the younger age group (infancy to 1 year of age) a few parents found their child's skin had a slightly orange hue, in the 1-3 age group one parent reported increased fussiness and hyperactivity, in the 5-10 age group one parent attributed moodiness and aggressively to the treatment. Given the small numbers in the sample it was not possible to evaluate improvements in neurological development.

This preliminary study is very encouraging and should be pursued. It is of paramount importance that all parents fill out carefully both a before treatment and after treatment questionnaire.

Why is this questionnaire important? Designing better treatment strategies for children with Down syndrome can only come with better understanding of the metabolic disturbances responsible for the manifestations of trisomy 21. Much work is done in the laboratory but this must be followed by practical implementations for each child. Parents need to give an evaluation of the way their child is responding to a given preparation. If we notice that most children improve in one area but that there is no modification in another this means something in terms of scientific the evaluation must also be rigorous. All children receiving some form of supplementation must be evaluated (by parents filling out the questionnaire) before they start and then again after having been on some form of supplementation for three to six months.

In conclusion this preliminary study has documented a number of improvements in the health of children with Down syndrome. A significant improvement in immune function can at this stage already be affirmed. This study needs to be continued so that it be possible to evaluate neurological development.