Question:
Male, 38 years old, deletion subtype
We are working with our son’s group home to help monitor his food intake. Is there a standard reduction in listed serving sizes we can recommend for them to follow to help staff with his meals?
Nurse Lynn’s Response:
I’m glad to hear that you’re working together with your son’s group home staff to support consistent meal planning and food monitoring. Collaboration between families and residential teams is one of the most effective ways to keep things safe, predictable, and healthy for individuals with PWS.
When it comes to serving sizes, there isn’t one universal percentage reduction that works for everyone with PWS. Instead, we tailor portions based on the person’s age, height, weight, level of activity, medical history, and daily structure. That’s why knowing more about your son, his current height and weight, medications, activity level, day program routine, and even things like money and Internet access protocols, helps us give accurate recommendations. These factors all influence calorie needs and food-security planning.
Many residential programs also work with a dietitian, either on staff or contracted, which is the ideal way to establish a formal portion system. PWSA | USA also offers nutritional support.
I’m linking the Nutrition Guidelines: Adolescence through Adulthood booklet, which gives excellent examples and guidance on portion adjustments specifically for PWS. It’s a great resource to hand directly to group home staff as well.
I’m happy to help fine-tune recommendations so that the plan works smoothly for both your family and the staff supporting him.
Resource:
https://www.pwsausa.org/wp-content/uploads/2022/12/Nutrition-Adolescence-Adult-Revised-Aug-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.