Question:
Female, 25 years old, deletion subtype
My daughter is 234.8 pounds but prior to the year before she was 185 pounds. I didn’t change her diet, but when she fractured her ankle, it took a year for her to heal but it is still tender to walk on it. In that time, she still ate the same but was less active. She put on the weight in that year and now she is becoming less mobile because of the extra pounds. I am decreasing her food intake and getting her to do some more movement that she can tolerate. Is there anything else I can do to reverse the weight gain? She is taking no medication and not under any physician care. Because PWS is so rare where I live, I don’t have any support from the physician’s office.
Nurse Lynn’s Response:
Thank you for reaching out. Weight gain after an injury that reduces movement is unfortunately very common. Because people with PWS have a much lower metabolism than typical adults, even small decreases in daily activity can lead to significant weight gain, even when the diet has not changed at all. When your daughter fractured her ankle and needed a long recovery period, her activity level likely dropped enough to cause the weight increase you’re seeing now.
Meals should stay predictable, with emphasis on proteins, vegetables, and low-carb options. Removing sugary drinks, snacks, baked goods, and fast food can make a big difference. For movement, because her ankle is still tender, stick with low-impact activities such as chair exercises, water walking, arm-cycle workouts, or several short 2–5 minute walks spaced throughout the day. Even 15–20 minutes of modified activity daily can start shifting weight downward in PWS.
Even though she is not currently under a physician’s care, it is very important to have a medical evaluation, because several PWS-related conditions can cause or worsen weight gain. Any doctor in Illinois, whether they know PWS—can order basic tests such as TSH and Free T4 (to check thyroid function), and A1c and fasting glucose (to assess metabolic health). These tests help identify common medical issues in PWS that can push weight up even when diet and activity look the same. It is also important to consider screening for sleep apnea and to think about whether reevaluating for growth hormone replacement could be helpful for energy, muscle tone, and body composition.
Illinois has several good options for PWS-informed care. The University of Illinois at Chicago has endocrinology and genetics teams familiar with complex hormonal conditions, and they can help with essential testing, growth hormone management, and weight-related medications if appropriate. The University of Chicago Medicine has adult endocrinologists who work with hypothalamic disorders and obesity syndromes, making them another option for PWS-related care.
As her mobility has decreased, physical therapy is also strongly recommended. In Illinois, PT is usually covered when mobility or function has declined. A physical therapist can help rehabilitate her ankle, improve balance, increase movement tolerance, and create a safe exercise program tailored to PWS needs.
You are already doing the right things by reducing food intake and encouraging movement. Adding medical evaluation and physical therapy, can make a tremendous difference in helping her return to a healthier weight and better mobility.
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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.
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.
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.
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.
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.