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Inpatient Prader-Willi Syndrome Program

6 tips for staying healthy after a Prader-Willi Syndrome program

For children and adolescents with Prader-Willi Syndrome (PWS), inpatient programs can be life-changing. They offer structured, supportive environments in which patients can shed pounds through controlled diets, physical training regimens, medical interventions, and behavioral therapies. After successfully completing a child weight loss program, you may be left wondering: how can I help my child maintain momentum and stay healthy?

Intentionality and consistency are the keys to keeping your child on track. In this article, we offer tips for maintaining a healthy diet and exercise plan after residential PWS treatment.

1. Establish a routine for your child with PWS

The success of inpatient programs lies partly in their reliance on schedules. PWS is characterized by chaotic eating patterns fueled by extreme impulsivity and impaired executive functioning.  Because children with PWS experience a lack of satiety, or the neurobiological feedback mechanism that triggers the feeling of fullness, they incessantly seek and ingest food at all hours of the day. This impulsive behavior creates the misconception that persons with PWS are constantly hungry. In fact, they both require and tolerate extremely low-calorie diets — when they have food security.

When children feel food secure, they have no doubt about the availability or contents of their next meal and no hope for unsanctioned supplementation. The former component – removing uncertainty from the equation – depends entirely upon a predictable routine. Create a visual schedule your child can reference, complete with detailed information about meal times and ingredients. Offer verbal reminders of upcoming meals and use them as incentives for good behavior. Just be careful not to frame food as a punishment or reward. Meals should be treated as non-negotiable certainties to reinforce feelings of food security.

2. Eliminate opportunities for snacking to manage childhood obesity

In addition to establishing a routine, it’s essential to squash any lingering hope your child may have about accessing food outside their meal plan. Installing locks on all cabinets and pantries, removing access to money and consistent supervision will help to manage their expectations. Be ready to stand strong in the face of challenging behaviors, such as manipulation, pestering, and whining. Through unemotional responses and consistent reinforcement of boundaries, you can increase feelings of food security.

To sum up the two main elements of food security: removing uncertainty helps children to relax and think less about food, while managing expectations about unplanned extras reduces stress. When both objectives are achieved, your child will feel more peaceful, calm, and tolerant of their low-calorie diet.1

3. Steer clear of sugar — even the artificial kind

Higher insulin levels in people with PWS have been associated with increased weight gain and leptin, a hormone that controls appetite and food storage. As with insulin, excessive levels of leptin can result in leptin resistance over time, thereby exacerbating the cognitive and behavioral challenges associated with PWS.2 Refined sugar should therefore be consumed sparingly or not at all.

Even artificial sweeteners stimulate the same reward centers in the brain and impact metabolic signals. So while they don’t contain the same amount of calories, they still trigger cravings and food-seeking behaviors. Help your child to view sweet foods as occasional treats, rather than staples in their meal plans. Teaching children to approach sugar in this way from an early age establishes powerful patterns that will continue to serve them well into adulthood.

4. Focus on macronutrients, not just calories

People with PWS require very few calories, which is why it’s so easy to overestimate caloric needs. Most children with PWS require between 1,000 and 1,200 calories per day to maintain their weight, and 600 to 800 to lose weight rapidly.

As important as it is to manage the amount of fuel your child consumes, calories are only part of a larger picture. Macronutrients — protein, fat, and carbohydrates — must also be carefully controlled to ensure a balanced diet. A diet consisting of 45% carbohydrates, 30% healthy fat, and 25% protein, with at least 20 grams of fiber per day, will give your child the nutrients they need while helping them to maintain a healthy weight.

5. Incorporate exercise into your daily routine

Exercise is crucial following discharge from a PWS program. While movement alone is not enough to combat the effects of an unhealthy diet, it offers a crucial complement to healthy eating habits. Regular exercise promotes social development by encouraging teamwork, interaction, and rule-following, helps children to discover their unique strengths, and improves overall physical, emotional, social, and cognitive wellbeing.

When it comes to exercise, there’s no wrong answer. Any physical activity your child enjoys, such as organized sports, yoga, ZumbAtomic, and walking, will have positive physical and psychological benefits.

6. Enlist the help of a dietician who specializes in pediatric obesity

A registered dietician specializing in childhood obesity and PWS can help you monitor your child’s weight and nutritional levels following inpatient treatment. In concert with your pediatrician, a nutritionist can order and interpret regular blood tests to ensure overall wellbeing and offer advice about the quality and contents of your child’s diet.

Are you interested in enrolling your child in a residential PWS program? The Nexus Jump Start Program is the only inpatient program in North America offering comprehensive treatment for Prader-Willi Syndrome and other weight-related disorders. Contact us to learn more.

1Dietary Management | PWS Association New Zealand

2High insulin linked to weight gain, excessive eating in PWS children | Prader-Willi Syndrome News

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