Researchers are examining alternative sleep apnea therapies in children with Down Syndrome, standard surgeries and positive airway pressure devices often fail to resolve breathing issues in this pediatric population.


RT’s Three Key Takeaways:

  1. High Prevalence and Unmet Needs: Between 50% and 80% of children with Down syndrome have obstructive sleep apnea, but first-line surgical removal of the tonsils and adenoids frequently fails to resolve the disorder.
  2. Therapy Tolerance Challenges: Second-line continuous positive airway pressure therapy is often difficult for children with Down syndrome to tolerate, leaving many patients untreated or undertreated.
  3. Alternative Treatment Pathways: Clinicians and researchers are studying novel approaches, including hypoglossal nerve stimulation, upper airway surgeries, and potential pharmacologic options, to improve long-term outcomes.


Obstructive sleep apnea (OSA) affects an estimated 50% to 80% of children with Down syndrome, presenting a rate substantially higher than that observed in the general pediatric population, according to experts from University of Michigan Health.

While up to 80% of individuals with OSA across the broader population remain unaware of their condition, the sleep disorder poses acute management hurdles in pediatric patients with Down syndrome, where standard interventions frequently do not provide adequate symptom resolution.

Limitations of First- and Second-Line Therapies

In most pediatric cases, adenotonsillectomy serves as the standard first-line intervention. However, the surgical removal of the tonsils and adenoids often does not eliminate OSA in children with Down syndrome.

“When adenotonsillectomy does not lead to complete resolution of obstructive sleep apnea, the typical second-line treatment is continuous positive airway pressure, or CPAP,” said Ronald D Chervin, MD, MS, co-director of the division of sleep medicine in the department of neurology at University of Michigan Health, in a news release. “That avenue may not be tolerated by children with Down syndrome, though, and many remain untreated or incompletely treated.”

Untreated OSA can carry severe consequences over time. According to the release, unmanaged sleep apnea can lead to serious health complications, including heart attack and stroke, while also driving daytime challenges such as excessive sleepiness, inattention, hyperactivity, changes in mood, and lower quality of life.

“Children with Down syndrome have other medical conditions that impact the heart, lungs, and brain over the lifespan,” said Fauziya Hassan, MBBS, MS, pediatric pulmonologist at U-M Health CS Mott Children’s Hospital. “These issues may be exacerbated by untreated obstructive sleep apnea.”

Hassan added that effective treatment may help lower both current daytime symptoms and long-range health risks for these patients.

Investigating Alternative Treatment Modalities

Because continuous positive airway pressure (CPAP) noncompliance remains a frequent barrier in this cohort, healthcare teams often explore alternative surgical and device therapies. According to Chervin, some patients are referred to otolaryngology surgeons to assess whether additional surgical procedures might improve upper airway airflow.

Another developing intervention is hypoglossal nerve stimulation (HGNS), an approach that utilizes an implantable device to electrically stimulate the nerve controlling tongue movement, preventing airway collapse during sleep. The technology originated with Inspire Medical Systems, and multiple HGNS systems are now available, according to Chervin.

To address cases where standard care is insufficient, researchers at Michigan Medicine are currently conducting three clinical studies evaluating alternative strategies:

  • The DOSA study is looking to find out whether supplemental oxygen, delivered by small tubes placed at the openings of the nostrils, may be better tolerated than CPAP and still effective at treating sleep apnea in these children.
  • The ssNPA study is trying to find out whether a small, simple and highly portable nasal stent invented at Michigan Medicine might be a good alternative treatment.
  • The TOPS-DS clinical trial is investigating whether, even before adenotonsillectomy, use of a thin, flexible scope to visualize the anatomy of the upper airway may offer opportunities to fine-tune the surgical approach and increase success rates.

As no alternative option has gained status as standard of care, and what is best under some circumstances may not be best in others, multiple approaches are being investigated, the organization says.