Sleep health is essential for everyone; it is just as important to take care of ourselves as parents and caregivers as it is for those living with Prader-Willi syndrome (PWS). We understand that disordered sleep has implications for cognitive outcomes, mental and physical health, and work and school performance. Sleep disturbances can occur from many factors, including weight, metabolic variations, and type of genetic imprinting. There are additional concerns to be aware of when it comes to persons diagnosed with Prader-Willi syndrome.
Sleep-wake patterns are often disrupted for those diagnosed with PWS. Frequently, excessive daytime sleepiness presents difficulties when attending school and work. Many of our children have built-in rest periods during the day, both at school and work. Those that require these rest periods during the day may hurt academic and work progress.
The importance of employing a combination of methods to address sleep health in our loved ones can not be understated. Speaking with your doctor about testing for Obstructive Sleep Apnea (OSA), sleep-related hypoventilation, narcolepsy, or the need for having tonsils/adenoids removed to improve the quality of sleep may be considered.
Other methods, including weight control, medication, and establishing a sleep schedule with sleep routines, can improve overall sleep health. Keeping a sleep log will be useful when speaking with healthcare providers about any sleep concerns you may have. The Centers for Disease Control (CDC) recommend that infants get on average 14-16 hours sleep per day, for children 1-12 years of aged 11-14 hours, for 13-18 years old 8-10 hours and adults should get seven or more hours of sleep per day. Please be aware of any changes to sleep patterns and report them to your healthcare provider.
Contributed by Lynn Garrick, RN
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.