Contributed by Lynn Garrick, RN
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 individuals 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 at work. Those that require these rest periods during the day may hurt academic and work progress.
The importance of implementing a combination of methods to address sleep health in our loved ones cannot 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 the following hours of sleep for various age groups:
- Infants: on average 14-16 hours of sleep per day
- Children 1-12: 11-14 hours
- Teens 13-18: 8-10 hours
- Adults: Seven or more hours of sleep per day
Please be aware of any changes to sleep patterns and report them to your healthcare provider.