Contributed by Jennifer Andrews
A diagnosis of PWS requires families to learn all sorts of new things, among them medical procedures we may not be familiar with. A fairly common one, the sleep study, can be a little daunting when you don’t know what to expect. Prader Willi Syndrome can manifest with a variety of sleep problems, starting with obstructive and central sleep apnea even in early infancy as well as later in life. Further, there is a risk of increased obstructive sleep apnea with growth hormone treatment. Sleep studies are commonly used to monitor this development. Sleeping away from home and being in a hospital is not easy on the child or the parent. We offer the following suggestions and resources to help make the experience as smooth as possible.
Before You Go
Keep yourself organized and on track by packing a bag for yourself and your child. Your child can arrive in pajamas, and if you want to – you can, too! Usually, the preference is for two-piece, non-footed pajamas rather than one-piece, footed, or nightgown-style options. Pack an extra set if your child has accidents, diapers and changing supplies, toothbrush, toothpaste, and any comfort items (more on that later). Include a list of current medications and doses. Unless instructed otherwise, do not give your child any caffeine that day. Ensure that their hair and scalp are as clean as possible for quick and accurate placement of the electrodes. If you’re going through all this trouble, let’s make sure the medical team gets the information needed!
Mentally Prepare
Many hospitals have great websites explaining their process, sleep study guidelines, and videos showing you and your child how it will be done. Here are a few examples:
Children’s Hospital of Philadelphia
Many children benefit from stories about events that they are preparing for. Here are a few resources for read-alouds:
Gillette Children’s “All About Your Sleep Study” – Free!
Ellie the Elephant Has A Sleep Study
The Hardest Part is Getting Started
Even if your baby is not a crier – my daughter only cried a handful of times in her entire first year – the experience of having strangers come at you with tubes and wires and adhesive can be unnerving. I found it helpful to sing our go-to lullabies: songs she was familiar with and comforting to us both. It’s hard to see your kiddo upset! Other strategies might be to play a song on your phone, distract with a noisy or visually engaging toy, speak in soothing tones, make sure they can see you, and feel your presence with them.
If your child is older, this may still be a long, somewhat uncomfortable, or annoying process requiring up to an hour of cooperation. Review with them what the process is and what is expected (see links above). Children may feel more empowered and prepared if they have a chance to plan what they want to do while getting set up and what they might want to do if they’re uncomfortable. Once the process is complete, children settle in pretty quickly, if they have any trouble at all.
Goodnight, Screentime!
Electronic devices/screens are usually not allowed in the room after the electrodes have been placed. This can be harder for adults than kids. Ask about what is allowed, where, and when. Sometimes, you can leave the room during the night and hang out elsewhere.
Settle In, Friend!
A parent or caregiver is expected to stay with the child during the night. You may want to bring your and your child’s toiletries (brush, toothbrush, toothpaste) for the evening and the morning after.
Goop Morning!
The adhesives used to keep the electrodes on your child during the night “stick around” the following day. Most people find that a gentle but thorough massage with some skin-safe oil or conditioner will loosen the remaining bits and chunks. Follow with shampooing and rinsing, and then go through the hair with a fine-tooth comb to get out the last of it.
When In Doubt, Ask About (It)!
The process is generally the same everywhere: arrive in the evening, after supper, with clean hair, attach electrodes and cannulas, sleep, wake up, and go home. However, each place will have its own specific way of carrying out these steps and will need your cooperation to get the best results from the visit. Ask any and all questions you have.
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.