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Sleep apnea affects over 50% of children with Down syndrome, and over 80% of adults with Down syndrome, compared to an estimate of 5-10% in the general population. Untreated sleep apnea can affect behavior and cardiovascular health, slower cognitive development, and accelerate the onset of Alzheimer’s disease.

WHY IS IT IMPORTANT TO KNOW MORE ABOUT DOWN SYNDROME RELATED SLEEP APNEA?

Sleep apnea affects 60-80% of individuals with DS compared to 5% in the general population and untreated sleep apnea can affect behavior and cardiovascular health, slower cognitive development, and accelerate the onset of Alzheimer’s Disease. Per a recent LuMind IDSC caregiver survey, only 17% diagnosed with sleep apnea fully benefit from a CPAP mask. Many are not aware of alternative treatment approaches such as hypoglossal stimulation. Also, a diagnosis of sleep apnea through a hospital overnight stay sleep study (polysomnogram) is very cumbersome for people with Down syndrome and alternative solutions are needed.

Down syndrome sleep apnea

CURRENT STUDIES AND CLINICAL TRIALS

  • MOSAIC: sleep apnea study for children by the University of Arizona, for families in driving distance of Tucson, AZ. This study will investigate the use a combination of atomoxetine (a medication approved by the FDA in children for the treatment of ADHD) and oxybutynin (a medication approved by the FDA in children for overactive bladder). These medications, which have been shown to treat obstructive sleep apnea in a small study of adults without Down syndrome, are thought to treat obstructive sleep apnea by increasing airway muscle strength, which is known to be lower in children with Down syndrome. If you would like more information about the study, please contact Silvia Lopez at slopez1@arizona.edu for further information.
  • Hypoglossal Nerve Stimulator Clinical Trial: Sleep Apnea study led by Mass General Hospital and taking place at several sites across the country. Doctors at Massachusetts General Hospital and Massachusetts Eye and Ear are studying new ways to treat obstructive sleep apnea in children and young adults with Down syndrome who have persistent obstructive sleep apnea despite prior tonsillectomy. They are researching how placement of an investigational surgically implanted nerve stimulator for the purpose of treating severe obstructive sleep apnea (OSA) improves the neurocognition and expressive language skills in children with Down syndrome, ages 10-21.  If you are interested in learning more about this study, and whether or not you/your child would be an appropriate candidate, please contact the research team by calling Dr. Hartnick at (617) 573-4206 or by email at Christopher_Hartnick@meei.harvard.edu.

CURRENT TREATMENTS OF DOWN SYNDROME SLEEP APNEA

Sleep apnea disproportionately affects the Down syndrome population (at least 10x more frequent) and, due to the inconvenience and challenges of overnight sleep studies, many individuals with Down syndrome go undiagnosed for years despite the consequences for their health.

LuMind IDSC funded studies have shown that verbal IQ was 9 points lower in children with OSAS and Down syndrome, who also showed executive function deficits.

Treatment options such as CPAP only benefit a portion of those diagnosed with sleep apnea and most are not aware of the alternative treatment options. Improvements in the diagnosis and treatment of sleep apnea in Down syndrome are dearly needed and LuMind IDSC is supporting and/or developing solutions for both.

Sleep Apnea and Down Syndrome, LuMind IDSC Foundation

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