by Joan E. Medlen, R.D.

A common concern for families of children with Down syndrome is weight management. Since many people have a stereotypical opinion that people with Down syndrome are obese and Americans aren’t the leanest group of people overall, this is a reasonable concern.

Preventing obesity through an active lifestyle, nutrition education, and emotional support from family and friends is the ideal answer. In a perfect world, this begins in early childhood. Great idea, but not always easy to put into practice. This is part one of a series of three articles promoting sound weight management and food-related habits in: 1) Early Childhood, 2) School Age and Adolescence, and 3) Adults: At Home and in the Community.

Recent research suggests that children with Down syndrome have a lowered resting metabolic rate than their friends who are the same age. This means that children with Down syndrome use fewer calories when they are asleep than children the same age. This probably isn’t going to change as they get older. The same research showed that children with Down syndrome are just as active as other kids their age during the course of the day. Additionally, researchers found that, like other children their age, when making their food choices without adult direction, children with Down syndrome choose foods that met their overall caloric needs and were nutritionally balanced over time. However, because their overall caloric needs were lower, the amount of food chosen was less. This means they may be at risk for vitamin and mineral deficiencies. These deficiencies are best met by supplementing with a standard over-the-counter multivitamin rather than over-management of food choices.

Clinically, there are different categories to describe a child’s weight:

• Appropriate: within 90-110% of desired weight.
• Overweight: 111-120% of desired weight.
• Obese: >120% of desired weight. Morbidly Obese: > 200% of desired weight.

Chances are parents already have an idea where their child fits on the scale. If not, adapted growth charts for children are widely available in books like Babies with Down Syndrome: A New Parent’s Guide (p.105–108), or off the Internet at http://www.growthcharts.com/charts/ DS/charts.htm. Beyond the 95th percentile, an educated guess is probably sufficient. Also, if a child is beyond the 95th percentile for weight, that does not mean they are above their desired weight. For instance, a child can be off those charts for both height and weight, and not be overweight. The most important use of growth charts, especially in the younger years is to look for unexpected changes in how children are following the growth curve. An unexpected drop from over the 95th percentile is just as worrisome as an unexpected jump from the 50th percentile to the 95th percentile.

It is difficult to hear these medical categorizations attributed to a child because of the emotions we feel when we hear the terms "obese" and "morbidly obese." Remember, they are simply words that describe a condition. The real question is "What do you do about it?"

As with everything, it is best to begin at the beginning. First, check with your pediatrician to eliminate any medical reasons that might cause a child to be overweight such as a low thyroid level. If there are no medical concerns, then the child is usually overweight or obese because there is an imbalance to the energy equation. The amount of energy taken in is greater than the amount of energy going out. There are three ways to begin to balance this equation:

• Increase energy-out through activity,
• Decrease energy-in by limiting calories, or
• Both increase energy-out through activity and decrease energy-in by limiting calories.

A focus on calories alone is not only risky for children’s health, but it focuses too heavily on food. All children have great vitamin, mineral, protein, carbohydrate, and energy needs while they are growing. Limiting calories may cause children to get too few of what they need to develop well. An abnormal focus on food can also become an obsession over time. However, increasing activity not only burns more calories, but it has long-lasting health benefits such as increased muscle tone, increased metabolism, decreased resting heart rate, better sleep, and an overall sense of well-being. Therefore, the best approach is to focus on healthy food habits to fuel the body and to promote activity.

When working with overweight children with and without Down syndrome, the goal is to maintain the child’s current weight while they grow rather than losing pounds. As they grow, their height will be more appropriate for their weight. With this in mind, let’s look at some of the more important concerns in early childhood.

Ellyn Satter, a registered dietitian and certified social worker, has done significant work and research into the food choices, attitudes, and the feeding relationship between adults and children. Her research found that over time, when taught to listen to their body regarding hunger and food, children chose foods that met their nutritional needs for calories and vitamins and minerals over time, just as children with Down syndrome did in the study discussed earlier. The trouble is, parents have preconceived ideas about what, when, and how much a child should eat. Her recommendation is to define the roles of the feeding relationship in the following way:

• Adults are responsible for what is presented to eat, where it is presented, and when it is offered.
• Children are responsible for how much and even whether they eat the food offered.

The only change to this philosophy for children with Down syndrome is the addition of an over-the-counter multivitamin to accommodate for potential micro-nutrient deficiencies. This philosophy is particularly helpful when dealing with overweight children or changing food habits. As the "food battle" begins, parents have a rule to follow rather than a situation to control.

The early childhood years (ages 2-6) are loaded with challenges for children with Down syndrome. Some transition from being land rovers (crawling) to running (what happened to walking?). Some will transition from using sign language as their primary communication tool to verbal approximations. Others will begin working with pictures and voice output devices. Most will discover the novelty of friends, experience their first preschool, and, to most parents chagrin, discover the word "MINE!" And they will all learn how to wrap Mom and Dad lovingly, but deviously, around their little finger.

What a busy life they lead. Regardless of their weight, the most important thing parents can do during this time and throughout their child’s life that will affect their weight is to build their self-confidence and self-esteem. For the child who is overweight, this may be the most effective tool a parent has to offer. This is when the responsibilities of the feeding relationship mentioned above become an essential tool. The responsibility of parents is to feed children lovingly an responsibly. It is not to monitor how many servings of vegetables are eaten in a day, whether or not they cleaned their plate, or if they ate brownies over at their friend’s house. It is the parent’s responsibility to provide a structure for food choices and eating habits that is healthy, consistent, and without judgment.

Some ways to create this structure include:

• Providing scheduled meal and snack times. Children need to know that food is going to be provided. If meal and snack times are inconsistent, they may hoard food at mealtime or snack time because they worry about being hungry.
• Limit eating to a few areas of the house. This keeps everyone from eating in front of the TV, and discourages grazing (constantly eating throughout the day). It also keeps the house cleaner!
• Let kids help prepare meals and snacks. Meal and snack preparation are the perfect time for some fun learning experiences. Cooking provides many opportunities for grouping (group foods by size, color, or type), one-to-one correspondence (setting the table), and promotes lots of fine motor activities. Picking up nuts to put in the bread machine is just as much fun as putting Fruit Loops in an egg carton and the result is bread for dinner! The more comfortable kids with Down syndrome are around food, the more competent they will be at making their own food choices later in life.
• Do not use food as a reward. This can be difficult for parents of kids with Down syndrome because of all the people involved in their lives. Discuss how to handle rewards without using food with school personnel, private therapists, and babysitters. If a child learns that certain foods are special by receiving them as a reward for good work, they will likely carry that into their adulthood.
• Do not offer food unnecessarily. If a child falls off the swing at the playground or has his feelings hurt by a playmate, do not comfort him with freshly baked brownies. Also, do not offer high sugar drinks like soda and juice to quench thirst when water will do. Calories add up quickly when you drink apple juice whenever you’re thirsty!

Remember there are some situations that are nutritional "goners." Sleepovers at Grandma’s house, holiday gatherings, and birthday parties are situations where every child eats differently. If a child is behaving like all other kids and the only reason to step in is his weight, don’t do it. Let him be a child. Food is one of the great social equalizers. Kids with Down syndrome need those moments to build strong friendships that will last when they get to elementary school. In addition to these food-related goals, it is important to be active as a family. Find games and activities that can be done as a group such as tag, going for walks, swimming, or riding trikes and bikes. Being an active family will introduce activity to a child’s life as a fun thing to do. Although activity plays an important role in normal eating patterns and overall good health, at this age, it is not imperative. For the overweight child with Down syndrome, the relationships that are built in the process are the most important part of the activity. This is another way to build self-confidence and self-esteem.

The most important thing to remember is that any changes made must be gradual, long-term, and for the entire family. Young children with Down syndrome who are overweight do not need to be put on diets. They do not need their food micro-managed. They need parents who set boundaries and provide the security structure regarding food. They will be most effective at managing their food choices and many other choices in life if they believe in themselves and their abilities. It is in these early years that we, as parents, can build a strong foundation for all the challenges that lie ahead, including food.

Some Fun Nutrition Books & Activities for the Early Childhood Years

How to Get Your Kid to Eat, But Not Too Much. Ellyn Satter, R.D., ACSW. Published by Bull Publishing Co., 1987. ISBN 0-915950-83-9. $14.95.

Eating the Alphabet: Fruits and Vegetables from A to Z. Lois Ehlert. Published by Harcourt Brace Jovanovich, 1989. ISBN 0-15-224435-2. $4.95.

Kids Cooking: A Very Slightly Messy Manual. The Editors of Klutz Press. Published by Klutz Press, 1987. ISBN 0-932592-14-7. $13.95.

Learning to Set the Table Placemats: Set of 4 and Matching Dish Set: Set of 4. A set of placemats with outlines for where dishes go in a place-setting for a meal. The Dish set exactly matches the outline of the placemats. Available from Lakeshore Learning Materials. 800/421- 5354. Item #LC64, $14.95 and Item #LDA178, $14.95.

Vegetable Lotto. A wooden lotto game for various vegetables. Available from Nasco Nutrition Teaching Aids. 4825 Stoddard Rd., Modesto,CA 95356-9318. 209/545-1600. Web: http://www.nascofa.com, email: info@nascofa.com. Item #SB2536HR $13.80.

Yummy 5-A-Day Fruit and Vegetable Game. A Lotto Game. Available from Nasco Nutrition Teaching Aids. 4825 Stoddard Rd., Modesto, CA 95356-9318. 209/545-1600. Web: http://www.nascofa.com, email: info@nascofa.com. Item #WA17205HR. $19.00.

Classroom Cooking From A-Z. An entire set of activities and tools (alphabet cookie cutters, measuring cups, and so on) for edible activities that teach the alphabet. Includes a recipe box with a recipe for every letter of the alphabet. Available from Lakeshore Learning Materials. 800/421-5354. ItemLC622. $49.95.

References

Luke, A. Rozien, N.J., Sutton, M., Scholler, D.A. "Energy Expenditure in Children with Down Syndrome: Correcting Metabolic Rate for Movement." Journal of Pediatrics, Vol. 125, 1994, 829.
Luke, A.,Sutton, M. , Scholler, D.A., Rozien, N.J. "Nutrient Intakeand Obesity in Prepubescent Children with Down Syndrome." Journal of the American Dietetic Association Vol.96, 1262. Stray-Gunderson, K. Babies with Down Syndrome: A New Parents Guide. Second Edition Woodbine House, 1995. Satter, E. How to Get Your Kid to Eat But Not Too Much. Bull Publishing, 1987.

Reprinted from Diablity Solutions. The article above is reproduced from the Down Syndrome Guide disseminated by the Down Syndrome Clinic at Kennedy Krieger Institute. In accordance with federal copyright restrictions, the contents of this booklet may not be reproduced by photocopying or any other means without written permission from the copyright holder. © 1999 George Capone, M.D.


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