Question: We have a 40 year old son. He’s 5’6” and weighs 140. In 2006 he was at his maximum weight of 170. That year he moved into a community living arrangement with 2 other PWS individuals. He lost 35 pounds and had maintained that weight until recently. We’ve had to move him from the first agency because of safety reasons and we moved him into another community living arrangement, another agency, with one other young man who is not PWS. Food is locked up but he can’t maintain 135 pounds. He’s extremely active. He has a treadmill in his room and he walks 30-60 minutes per day, he does Zumba classes 4 times per week, he takes dance class 4 times per week. How concerned should we be that his staff can’t seem to maintain his goal weight? Thank you!
Nurse Lynn’s Response: Thank you for your question. I am happy to hear that your son is so active! A BMI of 25 is generally considered normal for adults with PWS. You mention that the food is locked up. Does he have a meal plan that he follows? I always say that the scale doesn’t lie. This means that the scale will tell you if he is getting more food than is in his meal plan (which is followed religiously by staff). Many providers weigh individuals at least 2-3 times weekly. It can be tricky to have both PWS and non-PWS individuals living together. At PWSA|USA, we have resources to look at meal plans and provide training to residential providers. I would be concerned if that weight keeps creeping up. People outside of the normal BMI are at risk for complications of obesity like type 2 diabetes, sleep apnea, heart disease, etc.
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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.
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.
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.
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.
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.