Question:
Female, 33, Deletion
My daughter went through several programs of weight loss in Pittsburgh. Their program saved her life. They don’t offer that program anymore. Are there any other programs that can help us with her weight? She’s very heavy again. When Covid hit, it got out of control again and I feel like I failed my daughter.
Nurse Lynn’s Response:
There is a program in Texas that helps individuals up to the age of 21 called Nexus. Getting our adult population access to these types of services to get back on track with their weight loss remains an area of need.
It is common for parents to feel like we have failed our children with PWS especially when it comes to weight and behavior issues. It is important to give yourself some grace. PWS is difficult to manage 24/7 when as caregivers, we often don’t get a break so we can recharge ourselves. COVID disrupted many routines including food and exercise.
Getting back on track can be difficult but you don’t have to do it all at once. Establishing new routines relating to meals and exercise is important and building in non-food incentives can be helpful. Remembering the principles of the Pittsburg program’s approach to food can be a place to start. We do offer nutritional support and help with meal planning through PWSA | USA. 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.
Resources:
Treating Prader-Willi Syndrome – Jump Start Program (nexushealthsystems.com)
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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.