Sleep Study #1
A few weeks ago Noah had a sleep study done because we suspect he may have obstructive sleep apnea (OSA). OSA is very common for kids with DS and some doctors believe that all people with DS eventually develop it. In the past several weeks we have noticed that Noah has been exhibiting some symptoms of OSA, which include sleeping with his mouth open, restlessness, snoring, periods of apnea and daytime drowsiness. OSA occurs when the airway closes partly or all the way during sleep, which blocks air from getting in. The drop in oxygen signals the brain to wake up, stopping the body from getting needed sleep. In children with DS the cause of the blockage is typically due to several things: a smaller than average airway, large tonsils and adenoids, and low muscle tone.
The technical name for what Noah had done is a polysomnography (PSG or sleep study). This type of study monitors numerous body functions during sleep, including sleep stages, eye movements, brain waves, muscle activity, breathing, body positions, oxygen level, snoring and heartbeat. It’s pretty amazing how much they can measure! We originally thought Noah’s sleep study wouldn’t take place until February or March based on the notoriously long waiting list at Seattle Children’s Hospital. We were surprised to get a call saying there had been a cancellation for the next day (the Sat after Thanksgiving). We readily took it and I immediately reached out to my network of DS moms to get advice on how to best prepare. Surprisingly, it went remarkably well. Noah was such a good sport! The technician was amazed at how calm and cooperative he was given the number of wires he was hooked up to, as you can see in the photos below.
Noah and I arrived at Children’s sleep lab at 7pm. The technician was great and walked us through everything that we should expect. After I got Noah in his PJs and gave him a bottle, she began to attach numerous wires to his head. My job was to hold his hands down to prevent him from grabbing at them. He tried to pull at them at first, but was then distracted by the wrappers from some of the medical equipment.
At least 10 electrodes were attached to Noah’s scalp, temple and chin with conductive paste in order to monitor brainwaves and muscle movement during sleep. A snore sensor was attached to his neck, along with electrocardiogram (EKG) wires to monitor his heart. Two elastic belts were around his abdomen to monitor breathing. Two sensors were placed on his legs to keep track of movement. An oxygen sensor was taped to his toe to measure oxygen levels throughout the night. An air sensor (nasal cannula) was taped underneath his nose to monitor breathing.
She then wrapped his head with gauze to secure the wires and put a hat on to keep it in place. The technician worked fast, but it still took about 45 minutes to get everything in place. Noah did great throughout all of this! Of course, as soon as the technician left the room he began fussing and frantically grabbing at everything. In the 30 seconds she was gone, Noah had pulled out 3 sensors which she then had to reattach. After that she put socks on his hands.
As soon as the lights were out, I rocked Noah to sleep and put him in the crib. It was an hour and a half past his bedtime at that point, so he was exhausted. I slept on a pull-out couch in the same room...at least I attempted to sleep. Noah woke up twice during the night and I soothed him back to sleep since they didn't want him pulling at the wires. He was on video and audio surveillance all night, so the technician was watching him the entire time. She came in several times to check various things and also turn him facing the right direction since he had wiggled around so much. This is Noah and I in the morning. Sleepy mommy, hungry baby.
We won’t get the results of Noah’s sleep study for several weeks. It can take a while because they have so much data to analyze. If he has OSA the first step will likely be to remove his tonsils and adenoids. Then we will have to do a follow up sleep study to see if it worked. More information to come when we get the results!