Ask Nurse Lynn: Managing Food-Related Behaviors

Question: 

Male, 9 years old, Deletion subtype

My son is 9 years old and weighs 130-135 pounds. He eats every 10 minutes. Then throws up and eats some more. We are seriously running out of food cause he eats so much and we don’t have enough food for everyone. How can we better control his eating? He has meltdowns that last hours if we tell him he can’t eat every 10 minutes.

Nurse Lynn’s Response:

I’m sorry you’re facing such a difficult situation. Managing PWS, especially around food-related behaviors, can be incredibly challenging. You’re doing your best in an overwhelming situation, and I hope these suggestions can offer some practical help.

Individuals with PWS often experience varying degrees of hyperphagia, a condition characterized by an intense, constant drive to eat due to a malfunction in the brain’s appetite regulation system. This is not simply overeating—it’s a complex physiological and psychological condition that makes it exceptionally challenging for your son to feel full or control his impulses.

This can result in overeating, associated health issues, and the behavioral challenges you’ve described. It’s understandable that remaining consistent with food security measures can feel overwhelming, especially when meltdowns occur daily and last for hours.

Setting small, achievable goals—such as gradually increasing the time between meals and using positive reinforcement to address meltdowns—can make a difference. With patience and consistency, these strategies may help reduce the frequency and intensity of meltdowns over time.

Immediate Steps for Managing Food Access

Secure the Food Environment:

1. Lock or limit access to food cabinets, refrigerators, and pantries. This helps reduce constant visual and physical cues of food.
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3. Create a clear and consistent structure where meals and snacks are planned, and your son knows when he can expect food.
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5. Use timers or visual countdowns to prepare the child for when meals or snacks are allowed.

Scheduled Meals and Snacks:

1. Set regular intervals for meals and snacks (e.g., every 3–4 hours). Use a visual schedule or timer to reinforce the structure. Explain that food is available only at those times. Over time, this can help reduce anxiety.

Portion Control:

1. Serve small, nutrient-dense meals to ensure he gets the necessary nutrition without excess calories.
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3. Provide meals high in protein, fiber, and healthy fats, which promote satiety and reduce hunger.
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5. Use smaller plates to visually make portions look larger, helping the child feel more satisfied.
6. Serve meals that are visually appealing and varied to enhance satisfaction without adding calories.

Behavioral Strategies

Positive Reinforcement:

1. Use a reward system to reinforce behaviors like waiting longer between meals or managing emotions during mealtime. Rewards could include non-food-related items like stickers, toys, or extra screen time.
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3. Create a visual progress chart that tracks successes, helping the child feel a sense of accomplishment.

Dealing with Meltdowns:

1. Stay calm during outbursts and remain consistent. Acknowledge his feelings with empathy.
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3. Offer alternative coping mechanisms like sensory toys or engaging activities to distract him.
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5. Do not give in to meltdowns. As difficult as this can be, giving in continues and promotes the behavior cycle.

Medical and Professional Support

Work with a Specialist:

1. Consult a physician or endocrinologist who understands PWS. They may evaluate his current weight and recommend specific dietary adjustments or medications to manage hyperphagia.

Involve a Dietitian:

1. A dietitian with experience in PWS can create a customized meal plan that balances nutrition while limiting calorie intake.

Therapeutic Support:

1. A behavioral therapist can help address meltdowns and teach coping skills. They can also work with your family to create a structured plan.

Emotional Support for You

You’re navigating a complex and exhausting situation, and it’s okay to ask for help.

1. Seek out PWS support groups (in-person or online). Connecting with other families who face similar challenges can provide emotional relief and practical tips.
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3. Consider reaching out to social services or charities that assist families with special needs for help with food or financial resources.

Your love and concern for your son are clear. Managing PWS is incredibly tough, and it’s important to acknowledge the small victories along the way. It may take time to find the right balance, but with professional guidance and consistent strategies, things can improve. You’re not alone in this journey, and support is out there for both your son and your family. I have linked some resources below for you to read.

Resources:

Resources A-Z: Behavior – Prader-Willi Syndrome Association | USA

Behavior-Tool-Kit-from-Prader-Willi-California-Foundation.pdf

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