Sleep Resources
Pain and Sleep Guide
If you are losing sleep due to a painful condition, you could be making your condition worse with each night that passes.
Down syndrome is the most common chromosomal disorder diagnosed in the United States, affecting about 6,000 babies born each year, according to the Centers for Disease Control and Prevention (CDC).
It is an incurable, genetic disorder that occurs when an extra chromosome develops while a fetus is forming and growing inside the womb. Chromosomes are small packages of genes in the body. Typically, babies are born with 46 chromosomes. People with Down syndrome have an extra copy of chromosome 21. Sometimes Down syndrome is referred to as Trisomy 21.
This extra chromosome affects how a baby’s body and brain develop and can result in mental and physical problems. Babies born with Down syndrome usually have developmental delays. Common physical features of Down syndrome include:
Children and adults with Down syndrome are at greater risk for hearing loss, eye diseases, and heart defects. They also face unique challenges when it comes to sleep, including sleep disorders like obstructive sleep apnea and insomnia. Despite these challenges, there are strategies that can help people with Down syndrome — and their loved ones — get a good night’s sleep.
People with Down syndrome face a variety of challenges when it comes to sleep. “Children with Down syndrome have problems sleeping mostly because of breathing and behavioral problems,” says Dr. Chris Norris, Certified Sleep Science Coach and founder at SleepStandards.com. “It’s the same for adults with that condition, however, adults can also suffer from insomnia and psychological sleep problems.”
Parents and caregivers of children with Down syndrome also face sleep deficits as they are often called on during their night to help soothe their loved one.
According to the National Institute of Health (NIH), 76% of children with Down syndrome sleep poorly, have more fragmented sleep, and wake frequently compared to typical children. These sleep problems often persist with these children into adulthood, and are often categorized as dyssomnia sleep disorders.
Dyssomnia is a primary sleep disorder that causes trouble falling asleep or staying asleep. Dyssomnia is divided into different categories — intrinsic, extrinsic and circadian.
Two of the most common types of dyssomnia sleep disorders individuals with Down syndrome experience are obstructive sleep apnea and insomnia.
Obstructive sleep apnea (OSA) is a sleep disorder that occurs when breathing is briefly and repeatedly interrupted during sleep. It occurs when the muscles in the back of the throat close, forcing the sleeper awake to catch his breath. It can cause fragmented sleep and excessive daytime sleepiness.
Between 35-42% of adults with Down syndrome suffer from obstructive sleep apnea — about 10 times that of the general population, according to a study published in the journal Breathe. Babies with Down syndrome are also at risk of having OSA compared to the general population, according to a study by NIH, which found 31% of babies with Down syndrome also have obstructive sleep apnea. Researchers believe this is due to physical abnormalities associated with the condition such as narrow upper airways, larger tongues and tonsils, looser muscle tone, and a propensity for being overweight.
OSA can cause low blood oxygen and, when combined with fragmented sleep, can lead to other health conditions, such as:
Insomnia is characterized by an inability to fall asleep or stay asleep. It is the most common sleep disorder affecting about a quarter of the general population, according to a recent University of Pennsylvania School of Medicine study. Children with Down syndrome are more prone to insomnia, according to an NIH study which found three quarters of children with Down syndrome had trouble falling asleep at night and staying asleep throughout the night. The problem often lingers with these children into adulthood.
Insomnia is often categorized as primary or secondary.
There are several causes for insomnia in the general population that may be more pronounced in children and adults with Down syndrome:
One way to improve sleep is by adopting good sleep habits, also known as improving your sleep hygiene. This involves changing some environmental and behavioral sleep factors surrounding your sleep.
“Most sleep issues can be improved by developing good sleep hygiene such as setting a routine at bedtime, following a regular sleeping hour, and having a bedroom that’s free from distractions,” says Dr. Norris. “Avoiding exercise, caffeinated drinks, and other stimulants at night would also help.”
If you suspect your loved one has sleep apnea, you’ll need to get a formal diagnosis from a doctor or sleep specialist. Non-medical treatment may be recommended such as raising the head of the bed with pillows or by using an adjustable bed.
Changing sleep position may also help. People with sleep apnea should avoid sleeping on their backs because doing so enables gravity to allow the tissues in the mouth to fall to the back of the throat. This can obstruct the airway leading to episodes of apneas (temporary cessation of breathing and hypopneas (abnormally slow or shallow breathing). Side sleeping is the preferred position for people with sleep apnea because it helps keep the airway open.
One common treatment for sleep apnea is a CPAP machine, short for Continuous Positive Airway Pressure. These machines gently blow pressurized air through the nose at a pressure high enough to keep the throat and airway open. While these machines are usually used by adults, some CPAP machines are specifically designed for children.
CPAP machines can be intimidating even for adult users. Here are some tips to help your child adjust to using CPAP:
Exercise and nutrition play an important role in helping you get a good night’s sleep. Here are some ways you can improve both.
Regular exercise. Even as little as 10 minutes of exercise a day has been shown to help you fall asleep and stay asleep throughout the night. Go for a jog or brisk walk, take a hike in nature, or dance to your favorite music. But, be sure not to do any vigorous workouts too close to bedtime as doing so can make falling asleep more difficult.
Relaxation exercises. One type of exercise that’s great to practice as your winding down before bedtime is a relaxation exercise. Taking a few minutes to relax and do some deep breathing before bedtime can help release overall tension.
Healthy diet. Some things to keep in mind:
Down syndrome is closely linked to sleep problems. Even caregivers of individuals with Down syndrome can suffer from insomnia, fractured sleep, and other sleep disorders. You are not alone. There are some small things you can do to help improve your sleep and the sleep of your loved one. If problems persist — or if you think you or your loved one has a sleep disorder like obstructive sleep apnea — consult a medical professional. Because, everyone deserves a good night’s sleep.
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