Question:
Female, 7 years old, unknown subtype
My granddaughter’s weight is out of control. I want help with exercise and eating and helping her lose weight ….and tips on helping her in the situations she lives.
Nurse Lynn’s Response:
Managing weight in a child with PWS can be challenging, but with the right strategies, you can help your granddaughter maintain a healthy lifestyle. I’m not sure about her current living situation but, I have linked some resources that you could share. We do offer nutritional support and help with meal planning through PWSAUSA. There is also a website that uses AI to help with PWS-friendly meal planning. It is worth looking at this to help with meal ideas. PWS Recipes
Diet & Nutrition
Children with PWS have a slow metabolism and a constant drive for food, so careful meal planning is essential. -Structured Meals & Portions – Serve small, balanced meals at scheduled times. Avoid grazing or extra snacks. – High-Protein, Low-Carb Diet – Prioritize lean protein (chicken, fish, eggs, tofu), fiber-rich vegetables, and healthy fats while minimizing sugars and refined carbs. -Limit Access to Food – Keep food out of sight and locked if needed to prevent overeating. Everyone in the home should follow the same eating rules to avoid temptation. – Hydration & Fiber – Encourage plenty of water and fiber-rich foods to help with digestion and prevent constipation.
Exercise & Physical Activity
Since children with PWS have low muscle tone, consistent movement is key to preventing excessive weight gain. – Daily Movement Goals – Aim for at least 60 minutes of activity per day (broken into smaller sessions if needed). – Fun, Low-Impact Exercises – Swimming, walking, dancing, or yoga are great choices. – Strength Training – Simple body-weight exercises (wall sits, resistance bands, playing on a jungle gym). – Make It Social – Turn exercise into a family activity to keep her engaged and motivated.
Emotional & Behavioral Support
Children with PWS often struggle with impulse control, anxiety, and routine changes, which can affect eating and activity habits. – Set Clear Boundaries – Use visual schedules for meals, activities, and expectations. Consistency reduces anxiety. – Positive Reinforcement – Praise non-food-related achievements (e.g., completing an activity, following the schedule). – Avoid Food as a Reward – Use stickers, playtime, or verbal praise instead.
Environment & Support System
A child with PWS thrives in a structured environment where food is controlled, and expectations are clear. – Involve the Whole Family – Everyone should follow healthy eating habits to create a supportive atmosphere. – School & Caregiver Awareness – Teachers and caregivers must understand her dietary needs and the importance of food security.
Resources:
Nutrition-Adolescence-Adult-Revised-Aug-2022.pdf
Follow-the-Principles-of-Food-Security.pdf
Weight-Behavior-Management.pdf
Food Security Locks and Alarms
PWSA-Grandparent_Ebooklet-Rebranded-2022.pdf
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Perry A. Zirkel has written more than 1,500 publications on various aspects of school law, with an emphasis on legal issues in special education. He writes a regular column for NAESP’s Principal magazine and NASP’s Communiqué newsletter, and he did so previously for Phi Delta Kappan and Teaching Exceptional Children.
Jennifer Bolander has been serving as a Special Education Specialist for PWSA (USA) since October of 2015. She is a graduate of John Carroll University and lives in Ohio with her husband Brad and daughters Kate (17), and Sophia (13) who was born with PWS.
Dr. Amy McTighe is the PWS Program Manager and Inpatient Teacher at the Center for Prader-Willi Syndrome at the Children’s Institute of Pittsburgh. She graduated from Duquesne University receiving her Bachelor’s and Master’s degree in Education with a focus on elementary education, special education, and language arts.
Evan has worked with the Prader-Willi Syndrome Association (USA) since 2007 primarily as a Crisis Intervention and Family Support Counselor. Evans works with parents and schools to foster strong collaborative relationships and appropriate educational environments for students with PWS.
Staci Zimmerman works for Prader-Willi Syndrome Association of Colorado as an Individualized Education Program (IEP) consultant. Staci collaborates with the PWS multi-disciplinary clinic at the Children’s Hospital in Denver supporting families and school districts around the United States with their child’s Individual Educational Plan.
Founded in 2001, SDLC is a non-profit legal services organization dedicated to protecting and advancing the legal rights of people with disabilities throughout the South. It partners with the Southern Poverty Law Center, Protection and Advocacy (P&A) programs, Legal Services Corporations (LSC) and disability organizations on major, systemic disability rights issues involving the Individuals with Disabilities Education Act (IDEA), Americans with Disabilities Act (ADA), and the federal Medicaid Act. Recently in November 2014, Jim retired.