Question:
Male, 29 years-old, UPD
My son is currently on oxygen and is having several health issues.
Our biggest concern is weight loss and finding a Dr in Florida who can help him as an adult with PWS.
Nurse Lynn’s Response:
Here is a general rule of thumb for weight loss for our folks:
- To maintain weight: 8-9 kcal/cm body height/day
- To reduce weight 7 kcal/cm body height/day
- To gain weight 10-11 kcal/cm body height/day
When we think about different types of diets, the one that we would recommend is the Mediterranean type of diet. Nutrition and diet for individuals with PWS can be quite a polarizing subject. You should consider the sustainability of whichever diet you will follow.
Along with diet, comes increased activity. If your son is reluctant to “work out” try building in more natural forms of exercise like parking further away from a store entrance or asking for help getting the mail from across the street. Things like that can help build endurance which will lead to increased tolerance for activity. I understand from your question that your son is on oxygen. This can limit tolerance and ability to exercise. With careful control of calories, you can achieve weight loss. We do have a nutrition support specialist that is on staff. Please let me know if you would like me to put you in touch with her. Another resource that is helpful is a website for meal planning https://pwsrecipes.com/
Regarding an adult provider who is knowledgeable in PWS, I would reach out to the Florida chapter, Kagetely@gmail.com. Oftentimes, suggestions of other parents in your home state is the best option. We understand that it is very difficult in most states to find knowledgeable adult providers. We do offer a peer-peer consult option where one of the physicians from our CSAB will consult with your provider to provide education and suggestions for treatment.
Do you have a question for Nurse Lynn? Submit your question here:
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.