Oh, sleep! Something that we all need but many of us never seem to get enough of, especially special needs parents. It is estimated that the parents of a new baby lose up to an average of six months' worth of sleep within the first 24 months of the child’s life .
If that sounds tiring to you, parents of special needs kids often experience this extended period of sleep loss for far longer than 24 months. For example, one study that surveyed parents of children with special needs reported that parents of special needs kids took a longer time falling asleep, had shorter sleep duration, and had poorer sleep quality than typically developing children .
Another study that followed parents of children who had been hospitalized reported that these parents felt like they were “walking in a fog” .
Any special needs parent knows that sleep is a precious gift to be taken when possible but what about special needs kids?
If special needs parents are suffering from poor quality sleep, then what about their children with Down syndrome who may be arguably getting less sleep?
Enter sleep apnea.
Sleep apnea, a condition that affects breathing during sleep, making it extremely hard to have high-quality sleep, is unfortunately common in people with Down syndrome. It is estimated that between 55%-97% of people with Down syndrome have sleep apnea whereas the typical pediatric or child population of sleep apnea is only between 1-4% .
Sleep apnea can be in one of two forms, obstructive and central. Obstructive sleep apnea occurs when lymphoid tissue like the tonsils or the adenoids become enlarged and block the airways making it harder to breathe. Central sleep apnea is more serious in that it involves the brain itself not telling the muscles to breathe during sleep and it usually involves serious illness.
Obstructive sleep apnea (OSA) is the most common form of sleep apnea in people with Down syndrome.
Why do people with Down syndrome have such a high occurrence of OSA compared to the typical population? The answers range from low muscle tone and poor coordination of airways movements to narrowed air passages, an enlarged tongue, and tonsillar and adenoid hypertrophy .
An increased incidence of obesity in people with Down syndrome is also a contributing factor.
But is that the end of the story?
Should you resign your child with Down syndrome to a fate of unending OSA, CPAP machines, and/or surgical removal of the tonsils and adenoids as the only options for a parent of a child with Down syndrome and sleep apnea?
While CPAP (continuous positive airway pressure) machines can be a godsend for those who need them they are sometimes not well tolerated by individuals with special needs. Is there any other approach to OSA that can reduce the need for them and potentially reduce or even eliminate OSA in people with Down syndrome?
To get to the root cause of OSA in people with Down syndrome, you have to understand why it’s there in the first place.
Let’s consider the above reasons given for OSA in Down syndrome, specifically low muscle tone, narrow airways passages, and enlarged tonsils and adenoids.
Low Muscle Tone
Low muscle tone seems to go hand in hand with people with Down syndrome. In fact, it is estimated that the vast majority, if not all people with Down syndrome, suffer from some sense of lowered muscle tone compared to a typical individual.
The reasons for this are complex and numerous. For example, ligamental laxity (“loose ligaments”) is often seen in Down syndrome. Also, there is a suggestion that people with Down syndrome are better able to relax their muscles over a longer period of time as compared to typical individuals which contribute to the overall picture of low muscle tone .
There is also research suggesting that low thyroid status or hypothyroidism contributes to low muscle tone in Down syndrome. Research shows that childre