Question:
Male, 6 years old, deletion subtype
My son is 6 and has PWS and autism. He has struggled with staying sleep for quite some time now. No problem falling asleep, but he consistently wakes up between 12:30-1:30am every night and will sometimes stay awake for 1-2 hours before trying to go back to sleep, only to wake up 30 minutes later. We tried a BIPAP machine with no luck. Melatonin doesn’t help. His sleep doctor has suggested a few meds and I’m curious if you know which sleep meds are most successful in people with PWS. She has suggested trazodone, cyproheptadine, guanfacine, or clonidine. She said trazodone is sometimes associated with weight gain, and I’ve heard that cyproheptadine can increase your appetite. I would love to get your advice/thoughts!
Nurse Lynn’s Response:
Sleep problems in children with PWS are very common, and research shows that many kids have trouble staying asleep even when they fall asleep easily. Studies of children with PWS tell us that sleep is often disrupted for many different reasons, things like sleep apnea, lighter sleep cycles, trouble moving between sleep stages, or the brain waking up too easily. Some children have central sleep apnea when they are young and later may develop obstructive sleep apnea. Even when breathing is treated, many kids still wake up in the middle of the night because their sleep is more fragile.
Because sleep problems in PWS can have many causes, medications are usually only a temporary fix. There is no single “best” sleep medicine that works for every child. The right choice depends on why your child is waking up, whether it’s from snoring, trouble breathing, discomfort, or the brain having trouble settling back down after an awakening. This is why a full sleep evaluation is so important. If there is untreated sleep-disordered breathing, like apnea or low oxygen, sleep medications will not work well. Sometimes the pressures on the BIPAP need to be checked or adjusted, or it may be worth exploring why the machine is hard for your child to use.
Your sleep doctor mentioned several medications. Melatonin only helps with falling asleep and works best when the room is dark and screens are off. It usually does not help children stay asleep. Trazodone may help with falling asleep and staying asleep, but it does not work for everyone and needs monitoring for liver function. Clonidine can help with behavior and sleep, but it cannot be stopped suddenly because that can affect the heart. Guanfacine is calming and may help some children who wake up feeling anxious or overstimulated. Cyproheptadine can make children sleepy, but it can increase the appetite.
The first step is always to look for the cause: apnea, discomfort, constipation, reflux, or an arousal from lighter sleep. Once those are addressed, sleep medicines often work better.
Resources:
https://www.sciencedirect.com/science/article/pii/S2667343624000271
https://pmc.ncbi.nlm.nih.gov/articles/PMC9163612/
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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.