31 Days of Down syndrome Awareness - Day 12

The National Down syndrome Society reports:  There is a 50-100% incidence of obstructive sleep apnea in individuals with Down Syndrome, with almost 60% of children with Down syndrome having abnormal sleep studies by age 3.5 - 4 years. The overall incidence of obstructive sleep apnea increases as children grow older.


Riley was diagnosed with sleep apnea just over a year ago.  We started using the CPAP at home in late August right before he started 3rd grade.  A year later and we are still tired.  We are still struggling with Riley's sleep.  We have certainly made progress and over all he tolerates the CPAP amazingly well.   I truly believe that if we could get him to sleep well on a regular basis that we would see a huge impact on his behavior and his attention at school.

 We cycle up and down with how long he will wear the mask and how many apnea it is reporting he is still having each night.  We have not found the magic combination of pressure and mask for him.  Last Friday we picked up a new mask for him to try.  This one covers his mouth and nose instead of the old one that only covered his nose.   His mouth was opening a lot while he slept and that breaks the seal so the air comes rushing out his mouth instead of keeping his airway open.  The real issue is the noise its makes and the fact that it wakes him up.  Having him wake up is BAD especially since if he's awake then I'm awake.   You'd be stubborn and grumpy too if you were making up multiple times every hour.  Riley and I have a solid excuse for our sassy attitudes.

If we are on a good cycle and he's getting good sleep for several days to a week then we see those improvements in behavior.  It only takes one night of horrible sleep and we are right back at the beginning.  The Dr. did confirm that its not just in my head that it only takes one night to put us back at the beginning having to build on that good sleep again.

We will eventually find the magic combination of mask and pressure setting.  I live by the motto that we need to pick our battles with Riley.  I have picked this battle.  I just know that when we finally get it figured out we will all benefit from Riley's improved sleep.  It only took him about 4 1/2 years to be good with his hearing aids so I only have about 3 more years to go.

For those of you wanting a bit more info about sleep apnea and Down syndrome I pasted additional information from NDSS below.

Why Do Individuals With Down Syndrome Have a Higher Incidence of Obstructive Sleep Apnea?

Anatomy accounts for many of the reasons why there is a higher incidence of obstructive sleep apnea (OSA) in individuals with Down syndrome. Some of those factors include: central apnea, low muscle tone in the mouth and upper airway, poor coordination of airway movements, narrowed air passages in the midface and throat, a relatively large tongue, and hypertrophy (enlargement) of adenoid and tonsillar tissues.  Increased upper airway infections and nasal secretions and a higher incidence of obesity further contribute to collapse and obstruction of both the oropharynx and the hypopharynx when the individual is sleeping. 

What Are the Effects of Obstructive Sleep Apnea?

Sleep disordered breathing has been shown to affect cognitive abilities, behavior, growth rate and more the more serious consequences of pulmonary hypertension (abnormally high blood pressure in the arteries of the lungs) and cor pulmonale (failure of the right side of the heart). Because of the high incidence of underlying congenital heart problems in individuals with Down syndrome, there is a higher risk of development of the more severe complications. Abnormalities in pulmonary vasculature (the circulatory system in the lungs) also increases risk of development of pulmonary hypertension (abnormally high blood pressure in the arteries of the lungs). 

Unfortunately, the ability of parents to predict sleep abnormalities in their children with Down syndrome has been shown to be poor. A sleep study or polysomnogram continues to be the gold standard test from which to evaluate sleep disordered breathing and sleep apnea. Because of the poor correlation between parental reporting and sleep study results, the new American Academy of Pediatrics health care guidelines published in Pediatrics in 2011 recommend a baseline sleep study or polysomnogram for all children with Down syndrome by age four. Sleep apnea is often undetected in both children and adults, so caregivers should moniter sleep patterns in individuals of all ages, especially if there has been a change in mood, behavior or ability to concentrate.  

What Are Symptoms of Sleep Abnormalities?

Symptoms that are suggestive of sleep abnormalities include: restless sleep, snoring, gasping noises, heavy breathing, apneic pauses, frequent waking during the night, trouble getting out of bed, daytime sleepiness and excessive napping. Sleep apnea can also cause behavioral changes, including symptoms of irritability, poor concentration and impaired attention. Uncommon sleep positions such as sleeping sitting up, sleeping with the neck hyper-extended or sleeping bent forward at the waist in a sitting position are all suggestive of a sleep disorder or obstructive sleep apnea.

What Causes Obstructive Sleep Apnea?

Enlargement of the tonsils and adenoids is one of the most common causes of obstructive sleep apnea in children. However, other causes of obstruction such as chronic rhinorrhea and congestion, nasal septal deviation, and nasal turbinate enlargement need to be assessed and treated. If the oral exam shows edema of the posterior pharyngeal wall, thus decreasing the size of the posterior pharyngeal airway, gastro-esophageal reflux (GERD) or chronic post-nasal drainage should be considered. Treatment with anti-reflux medications and/or decongestants, nasal steroid sprays and antihistamines can sometimes be helpful.