TABLE 6.

Summary of weight management recommendations for youth with Down syndrome.

Recommendation 1: Youth with Down syndrome should be screened routinely for overweight and obesity.

Children with Down syndrome should be screened annually for overweight and obesity. Weight and height should be measured on a standard stadiometer and scale, ideally with the individual in a gown without shoes on.

BMI should be plotted on the Down syndrome-specific growth chart for youth up to age 10, and for children over the age of 10, BMI should be plotted on both the Down syndrome -specific growth chart and the CDC growth chart.

Recommendation 2: Clinicians and families should be aware of health conditions and risk factors that are common in Down syndrome and may impact the development of obesity.

Down syndrome is associated with several health conditions that have independent associations with dietary intake and physical activity pattern of youth with Down syndrome.

Clinicians working with youth with Down syndrome should screen for and monitor these health conditions to aid in the prevention or treatment of obesity, and families should be aware of how these risk factors may influence diet or physical activity

Recommendation 3: Clinicians should screen for feeding difficulties in all youth with Down syndrome.

Feeding difficulties are common among infants, children, and adolescents with Down syndrome.

Feeding difficulties, changes in feeding, or changes in respiratory symptoms with feeding should be reviewed during medical visits

Recommendation 4: Clinicians should include assessments of dietary intake and physical activity at every visit.

Collection of dietary intake and physical activity are essential for prescribing appropriate energy intake for both weight loss and maintenance, providing feedback to participants in weight management programs, describing changes over time, and determining the effectiveness of the program.

Assessment of dietary intake can be done by having a parent or caregiver record all foods and beverages consumed for 3-days prior to the medical visit using a simple diet journal or a smart phone app such as Lose it! or MyFitnessPal.

Assessment of physical activity can be done with self-reported questionnaires when a patient comes into the clinic or having the youth with DS wear a physical activity tracker.

Recommendation 5: Clinicians and families should set appropriate recommendations for dietary intake.

Youth with Down syndrome may have a significantly lower resting metabolic rate and total daily energy expenditure relative to body size and composition.

The estimated energy requirement equations developed for children by the National Academy of Medicine, previously the Institute of Medicine, provides the most accurate prediction of energy needs in youth with Down syndrome.

The macronutrient (i.e., fat, protein, carbohydrates) needs of youth with Down syndrome are not different than youth without DS. Thus, it is recommended to refer to the national dietary recommendations when providing dietary recommendations for youth with Down syndrome.

Recommendation 6: Clinicians and families should set appropriate recommendations for physical activity.

When setting goals for physical activity clinicians should consider current youth recommendations but take into consideration youths with Down syndrome current activity levels, sedentary time, cardiovascular health, and intrapersonal, parental, and environmental barriers to physical activity.

Physical activity programs should be enjoyable, accessible, structured, adapted to the needs and abilities of youth with Down syndrome, and should promote social interactions.

Recommendation 7: Clinicians should provide multi-component behavioral weight management treatment programs specific to the needs of youth with Down syndrome and with overweight or obesity.

The US Preventive Services Task Force Recommendation Statement on Screening for Obesity in Children and Adolescents recommends ≥ 26 contact hours over 12 months to improve weight status in typically developing children and adolescents. However, intervention programs with fewer contact hours may still be effective for weight management in youth with DS

Weight management can be provided to youth with DS using either face-to-face delivery or tele-health. However, tele-health may help to increase the reach of many treatment programs as well as overcome barriers related to transportation and time.

Interventions should be family based; however, clinicians should assess family stressors and consider the family environment before making recommendations for family-based weight management treatments.

Common components of successful diet interventions in youth with Down syndrome are:

Providing specific recommendation for the number of servings from each food group

Encouraging foods with low energy density (e.g. fruits, vegetables, and lean meats) and limiting foods with high energy density (e.g. sweet and fried foods)

Allowing individuals to have their favorite foods in moderation

Use of simple pictorial displays

Use of portion-controlled meals

Physical activity promotion efforts need to go beyond just recommending increased physical activity and should include structure exercise and increased parent involvement.

Multidisciplinary teams which may include the primary care clinician/pediatrician, speech language pathologist, occupational therapist, physical therapist, therapeutic recreation specialist, and dietitian, are critical for long-term-care and effective weight management

Families of youth with Down syndrome should self-monitor diet and physical activity at least once a week for general health, and daily when actively working to lose weight. Self-monitoring can be done in whatever method works best for each family.

Recommendation 8: Families should work to promote healthy eating and increased physical activity at home and school.

The recommendations for healthy eating and increased physical activity in youth with DS are similar to those for youth without DS.

Parents and caregivers should:

Act as role models in eating healthy foods.

Avoid using food as a reward.

Involve children in planning meals, food shopping, and cooking (if able).

Introduce 1–2 new foods every week and include at least one safe food the child likes in every meal.

Avoid pressuring child to try the new foods.

Limit energy dense foods such as sweets and chips to 1–2 times a week.

Offer a fruit or vegetable with every meal, including snacks.

Offer water instead of sugar-sweetened beverages (Soda, juice, chocolate milk)

Use positive language when talking about food or body weight.

Build exercise into the weekly routine

Consider remote physical activity programs designed for people with Down syndrome.

Consider ways to be active as a family: dance, take walks or hike, play outside.

Involve the child in physical chores such as raking leaves or sweeping.

Get involved in Special Olympics, team, community-based, or school sports.

Be sure to include physical education and physical activity goals in the child's IEP.