Every day the wonderful happens…

and I'm here to blog about it.

Say Hello to my Little Friend November 2, 2010

Filed under: Uncategorized — Elizabeth @ 1:36 PM
(disclaimer: talk to your doctor before trying ANY kind of medication–natural or otherwise–to use when trying to help your child sleep)

While it hasn’t been a huge secret that we have had sleep problems with Matthew, the parts that I usually talk about on the blog are the mood problems we have with him in the mornings and post nap. The fact is that Matthew hasn’t gotten a single night of good sleep (the amount a normal child his age would require) since he has been with us….and a part of me doubts that he has ever consistently gotten the appropriate amount of sleep.

I would go so far to say that he has insomnia. He goes to bed fine, and is usually there around 8 PM. He is happy and content. But the kid cannot go to sleep. If he was asleep before 10, we considered that a victory. Most nights I couldn’t tell you when he went to sleep because I would go to bed around 11 and he would still be awake. There have been nights that I know for certain that he didn’t go to sleep until around 5 AM.

At first we wrote it off to adjusting to the new time zone and to his new life. At one point, I thought it was somehow behavioral. And I also thought that he was just trying to “work” us. After all, we were told that his normal schedule in Korea was a midnight bedtime. We weren’t bending though.

I am a part of an online group that centers around schizencephaly and had been reading that many of the people affected by this disorder struggle with sleep. So I called Matthew’s neurologist and asked if there was anything we could give him to help with sleep. After learning that he cannot tolerate Benadryl (giving him that is like giving him a 6-pack of Red Bull), they prescribed a prescription sedative.

At first I was relieved to be getting some (doctor approved) help. But sedatives? For a 3-year old? It really made me uncomfortable. I filled the prescription and waited. I was scared–after all, Matthew had a bad reaction to being sedated in the hospital. He stopped breathing. Even though I was told it was safe, it took me weeks to try it.

The night I decided to give it to him, I administered it at 6 PM, thinking he would be passed out by 7:30. I put him to bed and waited. I was scared. Every so often we would sneak upstairs and listen outside his room. I kept telling Jason to make sure he was breathing. The child managed to stay awake until 9:45. There is no way medically that he should have been able to do that. Also, I didn’t consider that a huge success. And I didn’t want to give those sedatives regularly (and according to the label I wasn’t supposed to give those sedatives regularly), so I scrapped that idea.

Then about 10 nights ago, Matthew was awake until 4 AM. That was it. I couldn’t take it anymore. Not just him being up, but the fact that we have dealt with the aftermath of a sleep deprived child every day for almost a year. I knew he couldn’t help it and I knew he was even more miserable than I was, but I still didn’t know how to help him. When I would go to bed at 11 PM and hear him still up in his room, I would experience what I call the “snowball effect”. My inner monologue would go something like this–great, there’s no telling how late he will be up. He has to get up at 6:30 for school tomorrow. I can’t just keep him home, he needs the therapies. No wonder he is always in a bad mood, no wonder he is having trouble learning. He is sleep-deprived. He will probably never grow past 27 pounds because the body needs sleep to grow. Now I can’t sleep because I am so wound up about this. GAAAAHHH!!!

So I decided to forget the neurologist and I called our pediatrician, who I love. I poured out all of our problems into the phone and asked if melatonin was an option. I had done some reading online and found a number of parents of autistic children singing its praises, saying that now that their children were getting sleep they were so much calmer and even-keeled during the day. I wanted it. And I wanted it now.

After the nurse checked with the doctor, they explained an appropriate dosage to me, and they gave me the thumbs up to try it. When I saw it on the shelf at the store, and the label said clearly, Not for children under 12, I almost chickened out. (The only extreme sport I play is extreme rule following.) But I repeated my mantra as I walked to the cash register: the doctor said I could, the doctor said I could.

We gave it to him that night. After putting him to bed we stayed downstairs for about 30 minutes and then we thought to check and see if by some miracle he was asleep.

AND HE WAS. At 8:45. A bona fide miracle!!!! He was even on his pillow and under his covers. Usually it takes him so many hours to fall asleep that he is hanging off the end of his bed when his body finally gives out.

Wow. I have been worried that it was a fluke, but it has been going well for a week now. And we have seen such a difference in his attitude. A HUGE difference. I am hoping his teachers are noticing the difference too.

It is definitely making a difference for me too. And not just in how I relate to Matthew. You moms out there will understand that there is a switch that you can almost turn off when your kids go to sleep, whether it be naptime or bedtime. You can relax to an extent that is completely impossible when they are awake. That is why when Isaac doesn’t nap–even if he stays in his room the entire time–I can’t get as much done as I can when he does nap. A part of my mind and my energy are still with him. That was happening to me at night and I was never getting to turn it off because I knew Matthew was awake. My relief at night, now that he is sleeping is almost palpable….not to mention my joy at the good attitude and smiling face I am now experiencing in him during the day!

I am hoping that now that he can experience consistent good night sleeping, we will see a snowball effect of another kind–language growth, social and emotional development, happiness….who knows, maybe he will even start to grow out of his 24-month pants. The possibilities are (hopefully) endless!

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13 Responses to “Say Hello to my Little Friend”

  1. Christy Says:

    Oh. My. Goodness! I cannot imagine the difference consistent sleep would make for both of you! Wow! A year of that little sleep (and that little down time for Mom) is insane. And he's had 3 years of that little sleep! That's crazy! I am beyond excited about this working for you and hopeful that it will help with so many of his difficult times. He's 3, it won't help with all, but still, to only deal with normal 3 year old issues would be such a relief for you!

  2. Cori Says:

    This is amazing. I am excited to see what a difference sleep will make for all of you!

  3. Lara Says:

    Oh my stars, I do not know what I would do if my child stayed up until 4 AM. I am fairly certain you must have a halo and wings! Glad you found something that's working. I do not function on less than 7 hours of sleep, so I cannot fathom how you get through the day!

  4. chris Says:

    I cannot imagine the relief all around. Isn't it a real miracle when you actually find a solution to a problem you secretly suspect will never be solved–and such an easy fix. Thank God you persevered and were willing to try new things.

  5. Jenny Says:

    Elizabeth, I am so excited for you. I cannot believe that he has been not sleeping for ONE FULL YEAR..I know exactly! what you mean about your mind turning off, my kids sleeping well is probably in my top 3 of things that make for a sane mommy. Did y'all hear anything about the seizures yet? Praying for your family.

  6. This is so incredibly exciting! I know (and I'm sure you're familiar) what a HUGE difference a good night's sleep can make in your child. This is very exciting stuff for you guys and Matthew! I hope you continue to see very positive improvements. I'm convinced you will… I can't even imaging being so sleep deprived for so long! What a little trooper!I'm curious to learn more about melatonin… Olive has always been a bad sleeper. Not to the extremes that Matthew has, but certainly some very strange sleep habits, like playing for an hour or two before conking out (despite being visibly exhausted), as well as waking in the middle of the night to have a full-on party for up to two hours. It's unbelievable.Anyway… if you found any really great info on melatonin, I'd love to read it.And super-congrats on finding something that makes such a huge positive change! Isn't it thrilling to find another answer to the puzzle that our children are?!

  7. So happy for all of you. Never underestimate the effects of lack of sleep. It can make mamas a little coo-coo. I can't imagine what it has been like for poor Matthew too.

  8. Yvonne Says:

    Wow – what a great detective you are! I didn't realize that he was so underslept but of course that would affect everything. How wonderful that this is working and I agree with Cori – how exciting it will be to see how this affects so many other things. And I completely agree about being able to relax more when the kids are asleep – something I knew but once again, you verbalized it so very well.

  9. Yeah Elizabeth!! I am so excited for you & Matthew! I know how frustrating this has been… we've had sleep problems too, though not to this extreme. And I can't imagine how frustrated he's been – his little body just screaming for sleep and he just couldn't get there. Glad to know the melatonin is working. I pray this will put him on the path to many positive improvements. Sleep is so important! I'm not sure how you've done all that you have on such little for so long, but then again, I'm only functioning on about 5-6 hours these days so I know it can be done. =){{hugs}} to you my friend.

  10. Kristen Says:

    I'm sooo glad you found something that is helping Matthew get the sleep he needs that you also feel comfortable using!!! Many of the moms in my oldest son's group therapy class use melatonin and love it. We are in the process of trying to eliminate our 4 yr old's nap to improve his nighttime sleeping but if that doesn't work we too will be going the melatonin route as we have spent the last 3 years trying everything other option. I know its hard to give your child any sort of sleep aid, but in my opinion when you've reached this poinst, the benefits of good sleep far outweigh any other concerns of feelings of guilt.

  11. elizthm Says:

    Our biological son, who is now three, never slept well, from the time he was born! I heard from everyone that I just needed to let him cry himself to sleep, that I needed to stick to a routine, blah, blah, blah…even my own mother (mother of six) quietly felt I'd created this mess…until SHE came to stay for a week and tried to get him to sleep! Then she conceeded that something WAS NOT RIGHT. Three pediatricians, one gastroesophageal reflux study, and one sleep study at our local pediatric hospital later and no one has a diagnosis…BUT through this process we discovered melatonin, also, and WHAT a life-saver it was for us! (Source Naturals (trademark) makes a 1 mg sublingual tablet that tastes good, by the way.) He still doesn't sleep the way I've heard that other children his age sleep, but at least I feel he's now getting ENOUGH sleep…Hang in there! I completely get the sleep deprivation thing, and it's effect on the whole family!

  12. kelly Says:

    I didn't realize things were so bad in the sleep department … I'm so excited you've found some relief FINALLY!!


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