Question:
Female, 50 years old, Deletion subtype
Hi there. My sister is 50 and lives in a group home. In the last year, she has started to have extreme behavior that she hasn’t had before. She runs away from her home, screams aggressively, tears up her belongings, etc. I’m very concerned because I’m afraid the doctors in her small town don’t know how to handle her situation properly. They changed her medication several times, and for the last two weeks, she hasn’t had an episode but is very sedated. I know that’s better and properly safer for her and the people around her but seeing her so out of it makes me sad. Do you have any advice or suggestions for doctors in the southeast that could be helpful? She is on Medicaid. This has been really hard on my sister and family. Thank you for any help possible.
Nurse Lynn’s Response:
When someone with PWS begins having new and extreme behaviors as an adult, like running away, yelling, or tearing things up, it usually means something inside their body or daily routine has changed. People with PWS often show stress, pain, illness, or emotional overwhelm through behavior, and it can be hard for doctors who do not understand PWS to see that. The goal of adjusting medications in PWS is not sedation—it is to identify what is causing the behavior and to choose medications that support emotional stability, clear thinking, and safety while preserving the person’s strengths and individuality.
Because your sister lives in North Carolina, one of the best resources available to families is the UNC Multidisciplinary PWS Clinic in Chapel Hill. This clinic sees people with PWS and understands the medical, behavioral, hormonal, and psychiatric issues that can cause sudden changes. They have experts in genetics, endocrinology, psychology, nutrition, speech, and social work who work together to look for the true cause of the behavior.
You may consider the following if you haven’t already:
- *Ask her doctor or group home to do a full medical check-up. Infections, constipation, pain, thyroid changes, hormone problems, and sleep apnea can all cause sudden behavior changes in PWS.
*Ask for a careful review of her psychiatric medications. People with PWS are very sensitive to side effects, and the wrong medication or dose can cause agitation or heavy sedation.
*Have her group home keep a simple behavior log—what happened right before an episode, what time of day it was, and how she slept or ate.
*Contact her care team, including her case worker to request a referral to specialists who work with adults with developmental disabilities who are having behavioral issues.
*Keep routines calm, predictable, and structured in her group home. Sudden changes or unclear expectations can make behavior worse in PWS.
Do you have a question for Nurse Lynn? Submit your question here:
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.