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