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Monday, October 19, 2015

O is for Obstructive Sleep Apnea

While Obstructive Sleep Apnea (OSA) does occur in the general population, there is a much higher incidence of OSA in individuals with Down syndrome.

A study published in 1991 showed 45% of kids with Down syndrome had OSA - which can be caused by enlarged tonsils/adenoids, lower muscle tone affecting the upper airway, narrow nasopharyngeal area, and a flattened midface.

The National Down Syndrome Society states there is a 50-100% chance of OSA with almost 60% of children having abnormal sleep study results by age 4.

New guidelines from the American Academy of Pediatrics (2011) recommend a baseline sleep study for all children with Down syndrome by the age of 4.

Some of the signs of sleep apnea can be snoring, restlessness, gasping for air, pausing in their breathing, frequent nighttime wakings, hard to wake up in the morning, daytime sleepiness, and excessive napping. Untreated sleep apnea can cause behavioral changes, irritability, attention issues and poor concentration.

I didn't have the sleep study done when Kayla was younger because I didn't think she would tolerate all those leads and wires on her everywhere and it would just be a disaster. I didn't have major concerns about sleep apnea because I rarely heard her snoring (usually only if she was congested). She does seem to be somewhat restless when she sleeps (sometimes I wonder if she has Restless Legs Syndrome!) and she would wake during the night but not all the time and she would go back to sleep.

A couple of years ago we finally had the first of 3 sleep studies done because she was diagnosed with ADHD and sometimes sleep apnea can present with ADHD symptoms because if they aren't getting adequate, quality sleep they can poor concentration and attention.

The first one came back with mild-to-moderate apnea and we were referred to an ENT for follow-up. That ENT said he was 'underwhelmed' by the results and that her oxygen level didn't go below 90% and she didn't have long periods without breathing or gasping for air.

A year later we were seen at the Down syndrome clinic in MUSC and they recommended a repeat study but with their techs, so we had it done again and the results were virtually the same as the first one. (And no snoring was observed.)

Sleep study in style: rainbow-colored slippers, multi-purple-shaded snowman pj bottoms, and a tie-dyed t-shirt.
I don't know how anyone can sleep with all that stuff on and produce accurate results!

We followed-up with a different ENT who of course recommended having Kayla's tonsils and adenoids removed since she was diagnosed with OSA, they were enlarged, and that is the first treatment option.

She finally had the surgery done over the summer and her recovery didn't seem to be too bad (although her opinion of that might be different!).

I will sit in the chair in the pre-op area, but I will NOT get in that bed because then they will wheel me somewhere; it's safer in the chair.

After a little versed she moved to the wagon but then said her butt hurt sitting. I tried telling her she was too big. Thankfully, by that time, she didn't put up any protest to be moved to the bed.

After coming out of anesthesia and then settling back down to a comfortable position to sleep it off.

She had another sleep study to see if there was an improvement after having the tonsils and adenoids out.

The 'score' that she received on the second study was a 7 putting her at a moderate level, this last sleep study her score was a 1 which means no OSA was observed! Yay! So glad that this surgery worked and we didn't have to resort to a wearing a c-pap! When I mentioned Restless Leg Syndrome she said it recorded limb movements too and she did have several, but they were within normal limits.

I haven't seen any noticeable changes in her behavior though - she still seems to be sleeping the same to me. There are times where she still wakes up in the middle of the night, and she wakes up earlier than she needs to which she did before the surgery as well. I know a lot of parents say they can tell their child is sleeping better because their attention and concentration is noticeably improved, but I can't see any definitive changes in Kayla.

This still might not be an answer to those ADHD symptoms and improving her focus and attention span, but at least I know that her quality of sleep is much better now and that has to account for something!

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