- Children with DS often do not show some of the classic symptoms of sleep apnea (Jackson was one of those children).
- Sleep apnea causes a lack of oxygen through gaps in breathing throughout the night, and obviously, oxygen is important- for development, for life, etc.
- Sleep apnea disrupts a person's sleep cycle so that they often don't reach the deeper levels of sleep that help with growth (growth hormone is released during sleep) and cognitive development.
Jackson's ENT ordered a sleep study for him last October when Jackson was 19 months old because his tonsils were enlarged and touching. My husband and I were actually downplaying the likelihood of Jackson having apnea because Jackson slept in our room for the first year of his life. He had always slept soundly through the night, didn't snore, and had no obvious gaps in breathing- and like any new parents, we had stood over his crib countless times to make sure he was actually still breathing!
What we didn't know at first is that sleeping with the head tilted back (like he was looking straight up) and sleeping in odd positions were also signs of apnea. Unfortunately, lots of parents of kids with DS don't think a thing about odd sleeping positions because our kids are super flexible due to hypotonia (low tone). We also thought that Jackson thrashed about his crib about an hour before he woke up because he was just waking up and getting restless. Because it don't occur all night, we didn't connect it as a symptom of sleep apnea.
Jackson's first sleep study showed that he had moderate to severe Obstructive Sleep Apnea (most likely caused by his tonsils and adenoids) and mild to moderate Central Sleep Apnea. His ENT recommended having his tonsils and adenoids removed, and Jackson had that surgery the following month.
At his follow-up sleep study, his sleep apnea had improved but not completely resolved. We were pretty bummed to hear this but knew there were other avenues to pursue. The next step is usually starting a child on a c-pap machine, and Jackson just received his first mask and c-pap machine a few weeks ago. We are in the "desensitization" process right now where we are just trying to get him used to the mask while he is awake. So far, it's not going so well, but I was warned this is a marathon and not a sprint.
We also hope to find a dentist or orthodontist in our area who knows about early palate expansion as this has shown to improve and even resolve sleep apnea. Also, many people claim to have success with more natural approaches of treating sleep apnea- from essential oils and herbal treatments to acupuncture. While I haven't looked into these, I am not opposed to learning more if it will limit our long-term c-pap use!
While Jackson's apnea didn't completely resolve itself after his T&A surgery, we did see noticeable improvements in his ability to focus and in his energy levels. He also started sleeping in more regular positions and doesn't thrash about as he wakes up in the mornings. So having the surgery was the step in the right direction for us.
Find out more information about Obstructive Sleep Apnea and Down Syndrome here.
Symptoms of OSA in kids include:
- snoring, often associated with pauses, snorts, or gasps
- heavy breathing while sleeping
- very restless sleep and sleeping in unusual positions
- bedwetting (especially if a child previously stayed dry at night)
- daytime sleepiness or behavioral problems
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