This Isn’t Seattle

But we sure are sleepless.

For probably the last two years, Charlie has struggled with sleep. We have a rough patch, make adjustments, and then another rough patch crops up. It can take up to two hours for him to fall asleep and once he does, there’s a good chance he’ll be up anywhere between three and five AM. We have tried probably everything under the sun. No lights. Lights on. Early bedtimes. No bedtimes. Noise makers. No noise. Fan on. Fan off.Different rooms, different temperatures, different clothes.

We’ve tried a lot of different things and it seems like lately there are far more bad patches than good. When we finally got the point where he was sleeping a few hours each night and then two hours at school, we knew it was time to bring it up with the doctor. At our most recently neurology visit we discussed potential issues:

1. His cerebral palsy is causes low tone in the throat, and that, in turn is causing sleep apnea.

2. He’s having some kind of seizures either at night or while he’s sleeping.

3. His brain injury has made his body unable to properly regulate sleep.

None of these things can be diagnosed by looking at a child, so this past week we spent a good couple of hours meeting with a pediatric sleep specialist. She seems to be leaning towards possible apnea. Our neurologist is leaning towards regulation issues. Either way, Charlie’s on the schedule for a sleep study next week.

Yep. My preschooler covered in electrodes and trying to sleep. That promises to be veeeery interesting.

Either way, we’ll hopefully get some answers.

What, Mom? You know I don't sleep.

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Comments

  1. Good luck with the sleep study. I hope you let us know how it goes — I’m curious what you learn, as my daughter sometimes has issues too. I especially think #1 above is interesting — I wasn’t aware of that as a possibility, and it makes some sense. Does Charlie sleep in a regular bed? We still have Phia in a crib, but I kind of feel guilty about it because she will be five soon… I can think of potential problems with all of my other bed ideas though…

    • Gabriella says:

      Andrea: My son is 4 and still in a crib. We just ordered and received this bed tent: http://www.myreadysetbloom.com/
      Have you seen it? We haven’t assembled it yet because we are still searching for a bed frame and mattress, but it seems like a good option for some children and it’s been designed/created by a mom of a child with special needs.

  2. I’m concerned for Charlie’s sleep study. Even if he does need sleep apnea equipment my guess is it is unlikely he will wear it to bed at night. Mine was very uncomfortable and turns out I have clostraphobia.
    No way could I stand the cup over my nose. It costs a lot for the tests so make sure your insurance or assistance will pay for it. If I remember right the first test was over $2000. and each test there after. Normally there is just one more to clarify the first one. Also the phone rings all the time asking you if you need to lines which are to be replaced often and other pieces that go with the sleep apnea machine. So Dr. knows how much air to give you while sleeping. Some people that really need it really like it. I’m just uncertain of a child. It might help you to ask to peek in on another child having this done before you submit yourself and Charlie to it. I’m not right about everything and I could be wrong about this. Wishing you the very best.

    • They make a very small mask for kids now that goes under the nose and does not cover the mouth. It’s very new! :-) We also didn’t have any phones ringing during any of my son’s studies. The only time anyone disturbed us was if my son knocked one of the vital lines loose. It’s not a fun test, but at the pediatric hospitals they’ve done a lot to try to make it as easy on the kids as possible.

  3. Oh… I can totally relate… My daughter didn’t sleep for 6 and a half years. I tried EVERYTHING and then one day she just started sleeping, 11 hours on a road… And it has been like that for 1 year now. My life totally changed and hers too.

    If you asked me, I think it had to do with the brain injury… Sleeping is a cerebral function and it just wasn’t mature enough. But, the last treatment we did was with biological medicine, specific treatment made for her. So if anything, I’d recomend that :)

  4. Anna did not sleep for about 3 1/2 years. She was up every 2 hours. She now sleeps ok but she is on quite a lot of meds and her seizures are under control. I know so many special needs children who struggle with sleep so I tend to believe it has to do with brain injury. But whatever the answer is to Charlie’s sleep issues- I hope y’all get some rest soon!

  5. I’d be more than happy to talk to you about what a sleep study with a little one is like. Baby J has severe sleep apnea and is on oxygen and a cpap machine. I’ve blogged about all of his studies. They actually make a great mask right now for kids Charlie’s age called the pixi. It’s tiny and it leaves his mouth free. I can’t wait till J is big enough to be able to use that instead of the bulky mask. If Charlie does have sleep apnea and needs a mask, it will take a little while to get used to it, but it can be done.

    M also has sleep problems due to autism that on the surface sound similar to Charlie’s and melatonin has helped at least get him to sleep (though he doesn’t stay asleep), but melatonin wouldn’t help for any of the causes that you listed above, except for possibly the 3rd. So, if you rule out sleep apnea and seizures, it might be something to ask his doctors about…? It’s OTC.

    Good luck! And again, let me know if there’s any way I can help!

  6. We struggle with sleep too…we’ve always thought it was due to Matthew’s brain injury. I can’t wait to hear what you find out. I so wish Matthew would sleep through the night!

  7. I feel your pain. My oldest with Autism has struggled with sleep her entire life. It felt like we did everything. We did a sleep study and she had several episoides of apnea. We had her tonsils and adenoids removed. her tonsils were huge and touching. That didn’t work either.

    The sleep specialist we saw felt that their are several impairments that lend themselves to sleep disorders, one being Autism and the other being CP. A friend whose daughter saw him due to her CP, told me that he said that kids with severe CP often have sleep problems due to the brain injury and also they are simply just not as active as other kids and thus require less sleep.

    When Lauren was 6, we finally had to medicate her. I was 10 weeks pregnant with my 4th and had a 4 year old and 2 year old. I couldn’t do it any longer. We had switched one of her other meds and gone up 5 mg. it wrecked her sleep cylce and she went from sleeping about 4 hours a night to one hour in a 24 hour period. I then took off all of her meds and her poor sleep remained.

    i will never forget leaving her neurologist’s office and telling him “someone needs to leave her meds to help them sleep, I don’t care if it’s her or me”.

    That was almost 3 years ago and I’m thinking about taking her off the meds as her sleep as improved so much. I’m going to wait until this summer though.

    My other kids arent’ the greatest sleepers so I haven’t routinely slept through the night since June of 2002.

    My friend and I used to joke that we now understand why sleep deprivation is such an effective form of torture.

    Kristin

  8. Keeslermom says:

    Have you looked into a weighted blanket? It gives kids some proprioceptive input, which keeps them from needing to move/wake.

    • Gabriella says:

      I tend to agree with this idea. My little guy sleeps better in winter, with heavier blankets, than he does in summer.

  9. Oh man! My kid is about the same. Though he goes to sleep just fine. He’ll sleep a good few hours and then he’s up. He’ll be up the rest of the night then, most nights. We’ve had ONE sleep study. It went horrible and I vowed to never, ever go through another one again. The sensor that goes in the nose (just at the tip) got wet because my son has a lot of spit that he does not control much at night. Plus they were blowing air in his nose which caused his nose to be runny. Well once that sensor got wet it stopped sensing what it needed to be sensing and so the nurse person kept coming in to fix it but it never stayed fixed for very long. Before long my kid was awake for good. PLUS, I was instructed to not sleep in his bed with him or take him out of his bed and that if he woke up I was to try and let him comfort himself and fall back to sleep on his own. None of these things is how he was used to sleeping or going to sleep. I always rock him to sleep on my lap. If he wakes up in the night he won’t go back to sleep on his own. There’s no good chair in the sleep room plus I really wasn’t allowed to take him out of bed nor was I allowed to get in bed with him. I got so mad at them at one point that I did just as they said. Let him try to comfort himself back to sleep. It didn’t work of course and they didn’t get any information from their study.

    That was a few years ago. I’m a stronger, more confident person now. We are still having some issues with sleeping AND my kid has a cpap now too. However, we’ve met a wonderful sleep specialist who has suggested another sleep study. gah! I’m gonna do it. BUT, I’m gonna get in bed with my kid if that’s what needs to be done in order to get him back to sleep. And that’s that.

    Good luck with your sleep study. I hope it goes better than our first one did. Surprisingly the wires attached to the body did not bother my kid as much as the nose sensor did. In fact, if that stupid sensor hadn’t gotten wet he probably would have done just fine.

    Ironically, our upcoming sleep study is on Valentines day night. What a date! haha

  10. Oh man. Good luck. I pray that the sleep study goes good and you all can figure out what is going on. I am sure it is frustrating for you.

  11. My daughter also had obstructive apnea at night (low tone due to brain injury), interfering with sleep and oxygen levels (she was on oxygen all night as a result. Anyway – we did tonsils and adenoid removal, and it helped apnea and oxygen, but not sleeping! She’s still a horrible sleeper. We have several meds we use to help, and will have more options as she gets bigger. In her case, I think the brain injury just doesn’t allow her to calm herself back to sleep – she will stay awake all night long! Anyway – have fun with the sleep study – no one gets sleep at those things.

  12. Good luck. I hope it goes alright…

  13. Our ENT is suggesting a sleep study, too. And a tonsillectomy. I don’t know if we’ll do it now or wait. I’ve wondered about the nighttime seizures as well.

  14. Gabriella says:

    I always find it interesting that sleep tests are done with more disruption to sleep than a normal night’s sleep would be. Good luck to you!

  15. Too bad the experts cannot see apnea on a video of someone at home. What about the simple apnea monitors they send home with premies?

    Not to get personal, and you do not have to reveal here, but does he snore? I thought that was an indicator…

    Lots of good comments from those who know – I’d be interested to your answer about the weighted blanket. Could a pair of snug long-johns work, too? (I am not recommending Theratogs for sleep. Not.)

    Finally, this doc is really well-liked by parents and therapists here, even though he moved to Houston:
    http://pedzzz.blogspot.com/

  16. Elena had serious sleep issues too. She’s cry/SCREAM for a MINIMUM of two hours every night, between going to bed and getting up in the middle of the night. Sometimes it was four hours. It was AWFUL. We dreaded every nightfall.

    My husband and I argued between a neurological problem and a psychological problem (my theory was we were reinforcing something negative…but we didn’t know what it was). It started before Elena was verbal (she started talking at 2.5 yrs) and it took us two years before we got professional help.

    I didn’t want to do a sleep study, so we opted for a child psychologist, who magically took care of it. I COULD NOT BELIEVE IT. I still can’t believe we tortured ourselves for that long before we got help. It turned out that E thought we were getting upset with her for waking up (we were exasperated by all the screaming, not the fact she was awake). It may seem like a fine line…but once that was more-or-less figured out, it was nothing short of A MIRACLE.

    Not every option works for every child (duh, obviously) but a lot of us have been through sleep struggles. I hope you find some enlightenment along the way…not much rest, lots of darling little ones and a pregnancy–if you could get sleep in a bottle, no one deserves it right now more than you!

    I hope Charlie’s sleep study goes well, and that you all get some good information.

  17. Hope you find answers. A few of my friends are struggling with sleep issues with their children on the spectrum as well and I know that it is a real challenge.

  18. I’m a bit late for the discussion but we also narrowed it down to those three things. We haven’t done a sleep study (yuck) but we did the sleep deprived EEG for seizures. Nate never actually fell asleep for the EEG, which was the point, but sleep deprived, under heavy stimulus there was no seizure activity. We ruled seizures out. In November we removed tonsils and adnoids. Loud breathing and apnea stopped and he seemed to have less panicked waking. Last month against pediatrician recommendations we started giving Nate 1/2 dropper of melatonin. Amazingly Nate GOES TO SLEEP AND SLEEPS THROUGH THE NIGHT!

    Melatonin is suppose to be used for two weeks to regulate sleep cycle and then discontinued to avoid dependency and negative side effects. (Some studies suggest side effects like shrinking testes and altering the body’s natural production of melatin.) We discontinued and hoped for the best but were back to same-old same-old sleep issues. Nate had trouble falling asleep and was up every hour and a half or two through the night. Last night, after almost two weeks off melatonin, I gave him another dose. Sure enough, Nate slept through the night.

    Not sure what to do now. I obviously don’t want the side effects but I think the brain damage has altered either the production or regulation of Nate’s own sleep hormones. I’m not sure this assertion can be validated but should I care? Should I do what works now and deal with the possible long term side effects later? I simply don’t know. How can getting a full nights rest be trumped by any other factor?

    Best of luck. Keep us posted on what you find out.

  19. Owen’s sleep has always been rough but the two sleep studies he’s had (Oct 2010, March 2011) gave us fantastic, extremely valuable data. He was waking up 180 times a night due to sleep apnea. His sleep index went from a 20, to a 1.3 (1.5 and below is normal) after his tonsil and adenoid removal in January 2011. I hope you guys get some solid, useful data from the study. Please keep me posted. Has Charlie already had the study this week?