The Other Food Group

In the past 10 days, Chloe and I have had 2 decent nights of sleep. On the bad nights, she sleeps 1-3 hours. That is just insufficient zzzz's. It was once said to me that sleep is like another food group: you need it to survive. Boy, is that the truth! We're both barely functioning, let alone getting anything extra done (or laundry, or cleaning for that matter)!

Needless to say, I'm grateful we were able to meet with a sleep disorders specialist today. I'm desperate. I need all the input and suggestions I can get to resolve this issue. Chloe's lack of sleep is starting to control our lives, and we've just got to regain control.

So here's the long and short of it. He went over a 21-page report that broke down, analyzed, and made recommendations according to Chloe's sleep study. I'll try to explain it (as much as I understand it, that is)....

Chloe has sleep apnea. This appears to be due to a mild obstruction. They don't believe that the obstruction is her tonsils/adenoids, and have ruled out a tonsilectomy for now. They believe the obstruction is caused by her poor swallowing abilities, and she actually chokes on the secretions that build up in the back of her throat.

It is believed that she has reflux. Not necessarily acid reflux, but just regular reflux. Basically, because her body has low tone, all of her muscles function poorly, including her stomach and intestinal muscles. Therefore, pressure builds up when the body doesn't push things down. The pressure has to go somewhere, so it comes up. This can cause a lot of discomfort and pressure in her throat area, and will cause her to wake up.

They believe Chloe has severe anxiety. The primary indicator of her anxiety is the fact that she grinds her teeth throughout the night. Today I learned that tooth grinding is actually a primary indicator of underlying anxiety, especially for children who aren't able to communicate. They feel fear/anxiety, don't know how to express it, sometimes try to repress it, but the anxiety causes tension to build in the facial muscles, and they release that pressure by grinding their teeth.

There is also a theory that because Chloe is 2, and seems to be progressing along a somewhat normal cognitive pattern, they believe there is possibly some sort of 'imagination' going on when she wakes up during normal sleeping cycles. It's possible her imagination gets going, as normal 2-year-old imaginations do, causing her to cry. Since she's non-communicative, it's that much more difficult to soothe her because I don't know what the fear is.

It also stands to reason that since Chloe spends a great majority of the day being held, then falls asleep being held, that when she wakes up all by herself and isn't being held, then add on top of that her inability to move/control her body and her inability to speak, that she will experience anxiety.



Okay, so three issues. Three solutions.



To help with the obstructive sleep apnea, we are going to reduce salivations with Sal-Tropine. I'm not a fan of just adding prescriptions every time we turn around. I've actually been looking into a lot of natural remedies, and hoping to use fewer prescriptions. But like I said, we're desperate, so I'm willing to try this for at least awhile.

To deal with the reflux issues, we are going to do two studies: pH probe & impedance probe. Each test is a 24-hour evaluation of activity in the esophagus. One monitors the pH, and the other monitors subtle changes (muscle movement & air flow) in the esophagus. Our neurologist is trying to get the pH probe scheduled in two weeks. We have to see a GI specialist to get a referral for the impedance probe. These studies will help determine how severe the reflux is, and recommendations will be made accordingly. My understanding is that the typical response to severe reflux is placement of a nissin.

To deal with Chloe's anxiety, we're going to tweak her routines and try a new seizure medication, Klonopin. We need to try to change her expectations about nighttime and reactions to not being held, bedtime and sleep. We're going to see a behavioral specialist for some help with that. Basically, we've got to get her to start falling asleep by herself, and to learn that she is okay by herself in her bed. We're also going to confer with her Rehab & Neuro specialists about switching her seizure medication from Topamax to Klonopin. Klonopin helps control seizures, but also has some sedative properties as well as aids with anxiety. Chloe is currently on Seroquel as well, which is an anti-psychotic medication, and Klonopin may be able to replace that, which would make me happy. My research of Seroquel makes me want to scream, but when Chloe doesn't take it, believe it or not, our nighttime is about ten times worse.

So that's that. Pretty boring info, but it's easier for me to type things on here, than to explain them to the 200 people who want the full scoop. Maybe I should read this post to Chloe.... that should help her sleep for sure! I almost fell asleep just writing it! ;O)


So to end on a lighter note, here are a couple pictures we took of Chloe tonight. After our little family date, we stopped at Sportsman's Warehouse so Oby could look at some guns, even though he doesn't hunt. I dunno. Anyway, Chloe and I entertained ourselves by trying on different hats. There are surprisingly a large number of different and funny hats in this type of store. I didn't take any pix of all the hats I tried on to make Chloe laugh, but I'm sure you can only imagine. Here are the pix of Chloe.

First up, she's in a camo ball cap with lace along the top of the rim. It has a picture of a deer and says 'lil deer' in pink. Cute:



And here she is in a fox cap:


I'm really living up to the TMI title tonight. Sorry!