Question:
Female, 22 years old, Deletion subtype
My daughter is 22 and has hit 375lb. I feel helpless. She is diabetic and we have struggled to get it under control. She has been on Ozempic for a few years now and has not lost any weight, but her sugars levels have come down some. Should I look into getting her weight lost surgery? She has been sleeping a lot more lately and feels like she is swollen. I don’t know what new treatments are out there now. When she was a baby, we did growth hormones, but she was so tiny, so we stopped and never revisited again.
Nurse Lynn’s Response:
I am sorry to hear about your daughters’ challenges. It is imperative that you address her health concerns with a physician immediately, especially given the symptoms you’re noticing, like increased sleep and swelling. Monitoring for conditions like sleep apnea and right-sided heart failure are crucial.
Once she’s evaluated, consulting a dietitian familiar with PWS can help to create a tailored meal plan for weight management and diabetes control. Additionally, engaging with physical therapy and occupational therapy can support her overall well-being. Stay connected with your county case worker for resources and programs that might benefit her. As for new treatments, clinical trials could be an option down the line, but prioritizing her immediate health is key.
Ozempic can be helpful for overall glycemic control but, it has not been shown to have the same weight loss effects as in the general population. Weight loss surgery is NOT recommended for individuals with PWS. Hyperphagia does not change with the weight loss surgery, and, if overconsumption occurs, this could lead to stretching of the stomach or worse.
Please do not hesitate to contact me with any further questions. The PWS organization in California is well established and has many resources. If you haven’t already, they are another great resource to have at your disposal.
Resources:
Home – Prader-Willi California Foundation
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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.