- Sleep apnea is often thought of as a disorder that affects adults.
- But 60 percent of children with Down syndrome also experience sleep apnea.
- Sleep apnea can result in grogginess, headaches, and an increased risk of depression.
According to the National Down Syndrome Society (NDSS), around 60% of children with Down syndrome frequently experience obstructive sleep apnea (OSA).
Normally CPAP (continuous positive airway pressure) devices or surgery can be used to help resolve symptoms of sleep apnea, but for children, these treatments are less effective.
Researchers conducted a phase I clinical trial to test the device in adolescents with Down syndrome.
They implanted the device, called a hypoglossal nerve stimulator, in 42 participants with severe obstructive sleep apnea across five U.S. medical centers.
After one year, 66 percent of participants had responded well to treatment.
Study findings showed they experienced a 51 percent reduction in apnea events per hour, with quality-of-life surveys completed by parents reporting significant improvements in their children’s ability to function, language, and behavior.
According to the study, the most common adverse event was tongue discomfort, experienced by five participants, which resolved in weeks.
Lead author Christopher Hartnick, MD, director of pediatric otolaryngology at Massachusetts Eye and Ear Infirmary, told Healthline said the device is similar to a traditional pacemaker but used in a non-traditional way.
Hartnick explained that a little wire is placed underneath the chest wall on the top of a rib and senses when a child is trying to take a breath when they’re asleep.
Hartnick explained that the tongue could move forward, backward, or side to side, and there are different branches on the nerve that controls this movement. A signal from the device goes through a processor underneath the right side of the chest.
He said the device sends the signal to make the tongue move forward and clear the airway.
“So 80 percent of the time when we’re doing this implantation,” explained Hartnick. “It’s to identify all of those branches of the nerve that are primarily telling the tongue to move forward and excluding all of the other branches that tell it to move side to side or backward – so the signal is saying ‘just move forwards.’”
“And there’s another wire that goes from that processor to the branches of another nerve, called the hypoglossal nerve, that then gives a signal to say to the tongue, ‘please move forward and unobstruct,’” he said.
“Obstructive sleep apnea results when the throat/airway collapses due to obstruction during sleep,” explained Alex Dimitriu, MD, double board certified in Psychiatry and Sleep Medicine and founder of Menlo Park Psychiatry & Sleep Medicine and BrainfoodMD.
He described it as trying to suck on a straw that is blocked on the other end; the straw collapses.
“And the airway can do the same in people who have a tendency for airway collapse,” said Dimitriu. “Fortunately, almost no one dies from sleep apnea, as the oxygen-starved brain wakes up and re-opens the airway.”
Dimitriu pointed out that the problem is that some people will experience these sleep disruptions from five to 30 times per hour throughout the night.
“This is terrible for a brain trying to rest and recharge, almost like sleeping with someone poking you awake every 2 minutes,” he said.
People with sleep apnea may experience headaches or drowsiness in the morning and can have difficulty with work or school. They are also at increased risk of depression. Children are also at increased risk for hyperactivity.
Dimitriu said CPAP devices are the “mainline treatment,” for OSA, although nasal opening surgery or removing tonsils and adenoids can help in some cases.
Dimitriu pointed out that these traditional methods were less effective for children with Down syndrome.
“Per this study, removing tonsils and adenoids was of limited benefit,” he noted, referencing the study authors who wrote that only 16 to 33 percent of children with Down syndrome have resolution of OSA after undergoing the procedure alone.
“CPAP use, much like in typical adults and children, had mixed compliance,” Dimitriu said. “It was hard for some of the patients with Down’s syndrome to keep the device on through the night, or perhaps to even use it in the first place.”
Hartnick said he was most surprised by the feedback received from parents, not only that children were sleeping better, but the “downstream effects” parents were noticing.
“They were doing better at school,” he said. “They had less mood and attention issues and…they were actually speaking better – they were more understandable. Their tongue was working better.”
He pointed out that one of the great things about research is that if you ask an interesting question, you hopefully learn something along the way and then learn what the next question would be.
“So, I was very hopeful,” he said. “I wouldn’t have done it if I didn’t think it was very safe to begin with.”
Researchers use a pacemaker-type device to relieve obstructive sleep apnea in an unconventional way for kids living with Down syndrome.
The device is used to stimulate the hypoglossal nerve and move the tongue away from blocking the breathing passage during sleep.
Experts say an unexpected benefit was that improved sleep resulted in better all-around performance when these children were awake.