Question:
Male, 25 years old, Deletion subtype
Our son has gained 45 lbs. in the last two years since living on his own (now 220 lbs.). He is independent and successfully holds down a job and has an apartment. Two questions:
1. We recently read that the average age of death is still 30 years old and are concerned. What are the main medical reasons, so that we alert our physician while we figure out how to better manage his weight.
2. Would a mediterranean meal plan work? Or what do you recommend to help reduce his weight.
Nurse Lynn’s Response:
Unfortunately, we do not have group home or social services options in our area that can help us manage his weight.
When citing the statistics about death, you should realize that this is globally. There are many countries that do not have the benefit of early diagnosis, intervention and access to specialists like we do in the US. There are many individuals living a relatively normal lifespan (60’s and 70’s). As individuals age, some of the top concerns would be respiratory, cardiac and bone health. This is a complex disorder, and he will need a physician who is in tune with the needs of a PWS adult. I will attach links to several helpful resources.
A mediterranean diet plan is a good choice overall. I would also like to understand more about food security at home and at work. I assume he has supports at both work and home perhaps, that would be a great place to start with education and planning. Clearly, he cannot continue to gain 20+ pounds in a year without it adversely affecting his health.
Where in MN does he live? I happen to work for an organization here in MN that has supported individuals with PWS for 34 years and would be happy to speak with you about the resources in MN. We also have a robust state chapter.
Resources:
PWS Aging Research and Health Updates – Part 1 (youtube.com)
PWS Aging Research and Health Updates – Part 2 (youtube.com)
Medical-Overview-revised-2022.pdf (pwsausa.org)
IPWSO-CSAB-Overview-and-Evaluation-for-Adults-with-PWS-January-2018.pdf
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.