Question:
Female, 22 years old, Deletion subtype
My daughter is not sleeping…day or night. She sleeps maybe 2 hours at night and no naps. That means I don’t sleep. We have tried OTC and Ambien, and they don’t work. We need help, I am emotionally and physically exhausted.
I will reach out to her psychiatrist but wanted to know if there are things you know that may possibly work.
Thanks!
Nurse Lynn’s Response:
Sleep problems are very common in people with PWS, and when over-the-counter medicines or Ambien don’t help, it’s important to look at other possibilities. Talking with her doctor or psychiatrist about different medication options could be helpful.
It’s also worth checking if sleep apnea is part of the problem, since a sleep study can provide answers. Keeping a calming, consistent bedtime routine may also make a difference.
It’s also important to pay attention to any changes in her mood or behavior. Psychiatric issues such as anxiety, depression, or mood swings can disrupt the body’s normal sleep–wake cycle, which is already fragile in PWS because of differences in the hypothalamus.
On top of that, psychiatric medications like stimulants, SSRIs, or antipsychotics may affect sleep, sometimes keeping someone, too alert and other times making them overly sleepy.
In some states/counties there is a possibility of some respite services so you would be able to get things done or take a nap. I would have a conversation with her case manager to see if there are any options in your area.
Resources:
https://www.pwsausa.org/tips-for-better-sleep/
https://www.pwsausa.org/sleepsummit/
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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.