Tuesday, May 20, 2014

Completing the Requisite Sleep Study

Down syndrome comes with lots of stuff. Good stuff, bad stuff..."eh" stuff. Somewhere between "eh" stuff and bad stuff are the sleep disturbances. Some are dangerous, like obstructive sleep apnea. Some are scary, like night terrors. Others are just annoying, like night waking.  

Down Syndrome Education International has a terrific explanation of the most common sleep disturbances, like reluctance to fall asleep, waking, mouth breathing, and bed-wetting. While you visit, check out their very enlightening comparison of the frequency of sleep disturbances in children with Down syndrome compared to typical children, as well as suggestions on how to deal with several of them.

To get a better idea of how our children sleep many physicians recommend a sleep study somewhere around age four.

Max has his about two weeks ago at Boston Children's Hospital. From our point of view, Max's sleep is very disturbed--reluctance to sleep, waking, night terrors, flopping--so I was surprised to hear that Max's study showed normal sleep behaviors. Huh.

Some of you will be preparing for your little one's sleep study soon, so here's a look at how it went.

On the night of the study, Sean packed Max into the car already in his pj's and arrived at the hospital at 7:30 pm. They went directly to the sleep lab where the technicians allowed Max to roam the space, Mickey Mouse dragging behind, while they finished their initial preparations. Likely an anxiety reducing strategy.

When the techs were ready they plopped Max on the bed and went to work inserting and securing the nasal cannula and attaching the senors to his scalp. Note the strategic use of the iPad here. Max was too busy playing his game to notice the activity around his head. If your child doesn't use an iPad I recommend bringing a book, or movie or other activity he or she finds very engaging. You'll be happy you did.

To make extra sure none of the sensors slipped, the technicians wrapped Max's entire head in gauze. He looked like a binky-sucking cotton swab, but still didn't seem to care that much.

The straps around his torso secured a large sensor pad his back, and those cords, well, who the heck knows. Despite all of that seemingly unbearable equipment, Max fell asleep in seconds flat, and stayed asleep all night. Kinda like taking your clunking car to the shop where it drives beautifully for the mechanic.

Sean "slept" next to him on a pull-out chair, and around 6:00 in the morning the technicians woke Max up. They quickly removed all their gadgets leaving Max's hair a sticky, greasy nest, and sent Daddy and child on their way. 

There was nothing to it. I have heard that some children freak out a bit during the hook up, but calm down once the chaos clears. What seems to be universal, though, is that parents bring whatever makes the kiddo feel calm. Max's Mickey, iPad and binky went a long way toward helping him feel more comfortable.

Have you or any of your kids had a sleep study? I'd love to hear about it, and I know some other readers would too. Tell us about it in the comments.

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