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Monday, March 31, 2014

Sleep Study

Ella recently had a sleep study. It was our first experience with a sleep study, despite the fact that all our kids have sleep problems. I think I should have gotten the boys sleep studies, but at the time we didn't look at that as an option. The medication they take allows them to all get a restful night's sleep, so we felt the problem was, at least temporarily, solved. 

I finally convinced the pediatrician that there is something wrong with the way Ella sleeps, or doesn't sleep. Something abnormal and weird. She has pretty crazy twitches while she sleeps. She can't get to sleep. She can't stay asleep. Sometimes she is up at 3 am-- for the DAY! It's not that she's trying to be pesky. She tries so hard to fall back to sleep but she just can't sometimes. She's chronically fatigued. She is frequently irritable and tearful and clingy and anxious- things that weren't part of her personality before. Her sensory issues are magnified and troublesome to her. We need some help. Everything I've tried isn't working.

There have been amazing things we've tried along the way. Ella hasn't slept well for several years, so we've tried a LOT of things. Our OT has given us such incredible things to try. We've done energy work with Ella. I've tried using essential oils. She still gets brushed, which helps her overall mood a lot. We do baths in Himalayan pink bath salts, which are supposed to help clear negative energy. We do tapping, or EFT. Of course we have a bedtime routine. And we've used a weighted blanket. We've tried so many things. Nothing helps.

I'm always honest with my kids about doctor's appointments. They know that if they ask if something will hurt, I will tell them the truth. Sometimes I want to just lie and say "Nope! Nothing will hurt!" as I'm trying to wrangle eight little arms into coats and herd eight little legs out the door and four little butts into carseats. I know if I lie things would go smoother, at least until we get to the doctor's office. I know if I lie, I won't have to stuff a hysterical child, or four, into the car and make them promise they will not unbuckle themselves while en route to the dreaded appointment. But I made myself and my kids a promise- that I will be honest with them about appointments and pain. They all have so many appointments of so many kinds, I feel like it's only fair to them to give them honesty so they know what will happen at any given appointment.

So Ella asked if anything would hurt at this sleep study appointment. I looked her in the eyes, and I told her nothing will hurt. They will stick silly wires all over you, and then the two of us get to have a Girl's Sleepover at a special hotel room. It'll be weird, but nothing will hurt. 

Even though Ella is young, she knows I tell her the truth. So she believed me. As the technicians were putting sticky stuff and wires all over little Ella, I could see the struggle in her eyes. She was scared, but she believed me that nothing would hurt her. She didn't cry even once! I was so amazed and proud of her.

Sticking all those wires to her was quite an ordeal, and by the time they were done it was almost 10pm. Ella was tired. She laid down and the techs talked to us from behind their magic wall. We had a tech who was training and her supervisor. The tech who was training told Ella she was going to give her some directions to follow. The tech said "Look to the left without moving your head." Uh, she's four. Maybe some 4-year-olds could easily do what the tech said, but at 10 pm when you're freaked out and tired, and the stranger behind the wall is talking really fast and you're in a weird hotel room, that's too much to process. So I translated for Ella. "Don't move your head, and move just your eyeballs to look at the door" I said. The training tech said she had never had a patient this young, and that was a little bit obvious. The crazy thing was she never got the hang of talking to a little one. I think that tech needs a little more training. 

After the techs left us alone, we read a couple books and Ella fell asleep in no time. She did everything normally, which I was glad of. She jerked her limbs. She twitched like crazy. She woke up during the night. She fell back to sleep.

At 5am, the training tech came in and said loudly "Good morning! Can I turn on this light?" And she flipped the switch to turn on the fluorescent overhead lights. I covered Ella's eyes so she wouldn't be blinded. The supervisor came in and exclaimed "What are you doing? Are you trying to kill them??" He flipped off the horrible lights and turned on a lamp. Sheesh. A little more training is definitely needed. They took all the wires off Ella and we were on our way. We stopped for a donut on the way home. We deserved it. Ella was tired but I was EXHAUSTED. I didn't sleep much, worrying about Ella all night.

The day after the sleep study, Ella's skin started erupting. Everywhere she had had a wire stuck to her with adhesive, she broke out in an angry, ferocious red rash. All over her sweet little face. Her chin, neck, back, behind her ears. It was horrible. I tried all my Mommy Tricks to make her feel better but nothing worked. After a couple days of that misery, I took her to the pediatrician who said she has contact dermatitis. I said yeah, I know. I Googled it. We got stronger meds. I called the sleep clinic to see if they have latex in their adhesives, to find out whether Ella is allergic to that. Sure enough, there is latex in the adhesives. Ella is allergic to the adhesive on bandaids, but I hadn't even thought she would be allergic to all adhesives. I felt so badly for her. I'll have to remember this so it doesn't happen again. One kid with a latex allergy- check. One more thing for Mama to remember.

We met with the doctor last week to get the results of the study. The doctor said Ella had a good sleep study, and that her sleep is normal. What?!? I was so shocked, I didn't even argue with her. How can it possibly be normal? So our next step is to meet with the pediatric behavioral sleep doctor to figure out what else we can do to help Ella sleep. I know some of her problems at night have to do with her separation anxiety, but really, all that twitching cannot be normal. 

The adventure continues...

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