Children and young people with Downs Syndrome and their parents are faced with a multitude of health-related problems. This frequently involves one particular topic, nutrition, being viewed from a professional rather than a parental point of view, which can lead to substantial long-term health problems and risks.
The weight gain in children with Downs Syndrome below the age of 3 is less than satisfactory or moderate at best. A multitude of reasons are given for this, for example:
– The raised incidence of cardiac abnormalities in DS children, especially the increasingly common av canal.
– Abnormalities and deformities of the gastro-intestinal tract, e.g. Hirschsprung’s disease, pancreas anulare
– Orofacial dysfunctions
– Muscular hypotonia
This problem means that the feeding and nutrition for these children is often done in a way that includes, for example, more meals, energy-supplemented nutrition, or even formula feeding and a special diet. This leads more than a few patients and their parents to fixate on nutrition as a problem that everyday life must revolve around.
A large number of test subjects show a BMI progression that crosses the percentiles after the age of 3. Possible causes for this include:
– Maintenance of a higher-calorie diet, e.g. including following reconstructive surgery
– Resolution of orofacial problems and the related disruption of feeding and drinking
– Insufficient exercise
– Development of undesirable nutritional behavior with a preference for certain foods or food groups
These weight and activity problems worsen as children grow older, and possible causes for this include:
– Parental influence over the child decreases
– Facilities including special schools, residential schools, workshops, residential communities etc. do not focus enough on nutrition, nutritional behavior and exercise
Discussion and Summary
The nutritional pattern and problems of children and young people with Downs Syndrome requires close inspection, analysis and, if necessary, early intervention. The first priority should be diet problems involving difficulties with drinking and eating, frequently in connection with moderate or even poor growth levels in young patients. This often also correlates with a range of additional functional disorders such as cardiac and gastro-intestinal abnormalities or orofacial dysfunctions, but also with disruption to the interaction between mother and child. This problem can also resolve itself during infancy, however, in that the quantity of food intake is no longer an issue, but this still frequently results in an inadequate intake of energy. This leads in turn to a BMI that rises steadily as the years go by.
Parents have to be alerted to this problem, and ongoing training is necessary. The advice that we provide during our annual consultations with these patients has not proved to be effective enough. Close monitoring and professional advice that focuses on weight progression and nutritional patterns appears to be necessary. Facilities that look after children and young people with Downs Syndrome also need to focus on this problem.
The nutritional pattern is also the result of a learning process, which means it can be modified and corrected. It is therefore important to aim for the best standard of nutrition possible, particularly from the point of view of preventing nutrition-related illnesses. Generally recognized nutritional concepts such as those from the DGE can be used as guidelines for this.
Children and young people with Downs Syndrome should also be encouraged to participate in sporting activities. Downs Syndrome in itself does not exclude sporting activities, although attention should of course be paid to specific problems such as cardiac genesis. Endurance sports like walking and cycling etc. are ideal, with around 3 sessions of at least 30 minutes every week. Encouraging young people with Downs Syndrome, who tend to prefer more passive leisure pursuits, to take part in sporting activity like this requires a high level of motivation from their caregivers.
We have been collecting data on nutritional patterns in people with Downs Syndrome since June 2004. You are most welcome to help with collecting this data. More information is available on our home page at www.kinderarzt-bretten.de
Dr. Matthias J. Gelb
Specialist in Pediatric and Adolescent Medicine
Specialist in Nutritional Medicine for the DGE
Member Scientific board TRISOMY 21 Research
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