Question:
Male, 27 years old, Deletion subtype
What would a critically hazardous weight be for someone with PWS that’s height is 4’11”? Also, what is considered a good range for their blood sugar levels in PWS with diabetes?
Nurse Lynn’s Response:
When caring for someone with PWS, it’s important to remember that body weight alone doesn’t tell the whole story about health. People with PWS have a unique body composition — they tend to have more body fat and less muscle compared to others, even at the same weight or height. This means that their health risks can increase at lower weights or BMIs than we might expect in the general population.
For example, if your child or adult loved one with PWS is around 4 feet 11 inches (149.9 cm) tall, a weight over 140–150 pounds (63–68 kg) should raise concerns. That weight already places them in the “obese” category, but the risks grow even more serious as weight continues to rise. Once weight approaches or exceeds 175 pounds (79 kg) , which would be a BMI of around 35, doctors would likely consider that critically dangerous. At this stage, the chances of life-threatening problems can become much higher, especially in PWS.
Because people with PWS store fat more easily and have less muscle to help burn energy, their bodies struggle more to manage excess weight. That’s why doctors often aim for stricter weight goals and lower BMI targets in PWS than in other people. Even modest weight gain can have a big impact, so regular monitoring and early intervention are key.
If your child or loved one with PWS has also developed type 2 diabetes, keeping their blood sugar in a safe range becomes especially important. In general, these are the recommended blood sugar targets for most people with type 2 diabetes (including those with PWS, unless otherwise directed by a doctor):
- Fasting blood sugar (before eating): 80–130 mg/dL
- Blood sugar two hours after a meal: Below 180 mg/dL
Doctors also check a long-term blood sugar marker called HbA1c, which reflects average blood sugar over 2–3 months. The usual goal is to keep HbA1c below 7%, but this can vary depending on age, medical history, and individual needs.
Resources:
https://www.pwsausa.org/wp-content/uploads/2022/12/Nutrition-Adolescence-Adult-Revised-Aug-2022.pdf
https://ipwso.org/information-for-families/dietary-management/
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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.