Saturday, April 16, 2011

Jett's Sleep Study: Mommy's Nightmare

March 17, 2011

During REM sleep, your brain takes daily information from your short term memory and stores it in your long term memory. But, because of chemical imbalances, people with DS have much less REM than a typical person, which contributes to impaired memory. If you can't build upon what you learned that day, you have to start all over again the next day. It's very difficult to get from A to Z when you don't remember A.

That's partly why Jett takes ginkgo throughout the day and at night since it's proven to help restore REM in mice with DS. For more info on REM sleep and Ginkgo and how it connects to Down syndrome, see Teresa Cody's blog post:
So, I needed a sleep study to see how Jett's REM compared to that of a untreated person with DS and to a typical person. Does he need more ginkgo overall? Does he need an extra dose in the middle of the night? (Gingko has a half life of 7 hours, while the biloba part, most importantly, has a half life of only 3 hours.) Do I need to teach him to swallow a time-release capsule ASAP? Is it having any effect on his REM at all? (I'm working the assumption that, prior to using ginkgo, Jett's REM would be similar to that of an untreated child with DS.)

Additionally, Jett's growth is not up to par and since growth occurs in deep sleep, I was also curious to see just how much of all the other stages of sleep he was getting. Perhaps his lack of growth is because of too little deep sleep; or perhaps another chemical imbalance is causing the growth hormone improper production, release or utilization. Either way, I have to rule out each thing until I can find the cause. I need an exact problem before I can find a solution.

And now for the sleep study...

We showed up at 8pm with a suitcase full of toys, books, food -- anything I thought we might need in a nine hour period. The very-patient-lab-tech, Brian was very patient. He had a lot of patience. That must be the number one quality in a children sleep study technician.... Patience and perseverance....

When Brian walked in, I was cleaning out Jett's nose. Jett held up his little nostrils so I could more easily put in the nose drops, use the Nose Frida, etc.

Brain was impressed with his cooperation. "I applaud the fact that you're cleaning his nose, but later on, when he's crying, it'll all start all over again and you really won't be able to keep him totally clear."

"Oh," I said, "but Jett doesn't cry. Unless he's in dire pain, or something." Brain nodded his head, hopeful, but not he least bit convinced as I assured him of Jett's angelic nature.

Next, I had to distract Jett while Brian taped, wrapped, braided and glued 25 wires -- that's twenty five wires -- to Jett's wiggly, bobbing head, face, neck, back, waist and foot. This procedure took 45 minutes.

Brain was quite impressed with Jett. He said that he's done this to a thousand children and Jett was definitely one of the easiest. (He also remarked on his amazing cognition and motor skills as he busily played with the inflated hospital glove and flipped through the pages in his book.)

That turned out to be the easy part.

(Sorry for the blurry pictures!)

Once the bed was all prepared (allergy-free sheets, etc.), Brain said, "Okay, now I have to put on the last wires. (HUH?) This one in particular is the most annoying, but one of the most important. It touches his nose and hangs over his lip. (HUH?) It monitors the respiration and lip movement, etc. So before breastfeeding, you'll have to lift it up, very carefully, like this... (HUH? In the dark??) I've put extra strong tape on it to make it'll stay put. You can lay in the bed with him until he's asleep, but then you need to leave him and only come back when he wakes up -- not moves or moans, but wakes up."

I'd spent the last year developing the habit of attending to Jett's every little breath, whimper and sigh, around the clock... "Okay," I said, "Sure, I can do that."

After what felt like an hour and 15 minutes of rocking, singing and back patting, Jett finally fell asleep. As he was drifting off, I could hear children from other rooms crying. I slipped out of his (super noisy, plastic sheet lined) bed, ate a sandwich, checked my email and settled into the twin bed nearby. I was excited about the prospect of sleeping without him kicking me for one night.

I laid on the pillow and sighed deeply. Then Jett woke up -- rolled over -- with head up looking around, touching the bed clothes in search for me. It took about 20 minutes to get him back down. Back out of his (super noisy) bed, 20 minutes later he's awake again... This time screaming and crying all wrapped up in the wires... I couldn't see anything so I had to turn the light up a little bit to get the wires untangled. He was crying and crying and crying and crying and crying. I don't know how long it took me to get him asleep... An hour? He finally fell asleep on me and I carefully slid him off on his own again. I was ready to call the whole thing off. He woke two more times shortly after. Screaming, crying.

It was that stupid nose wire that was driving him crazy! He telepathically insisted that I take it off. So I did -- Brian wasn't kidding about the strength of the tape! After three rips, I got it off. Jett screamed bloody murder! But he finally settled down, rolled on his stomach and I got back into my bed.

Jett woke again at 5:30 am. Brian came in and said that he got enough data and we could leave. Yea!!!!! He said that it actually went very well and many kids never do fall asleep and have piercing blood curdling cries. He said Jett did great. I couldn't imagine that they'd get good data from it, but, at that point, I didn't care one single bit. I just wanted to LEAVE.

Even though I ripped off the tape and wires surrounding his nose and mouth, Brian said he still got a good reading because when Jett turned over onto his stomach, the mouth and nose sensors were in the correct position!

That traumatic night lowered Jett's immune system enough that Jett now has his first cold in his life. I sure hope the data we get was worth it!

UPDATE: Jett does not in fact have a cold. He's teething! He was up all last night and well, so were we.

Related Posts

Jett's Sleep Study: The Results
Ginkgo: The Hows and Whys for Down Syndrome
Stimulating Growth
Nontoxic Bedding

Laura's blog post with her experience as well as tips for surviving a sleep study:

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