Insomnia

Have a child with SM/Chiari? Share issues unique to children and their caregivers.

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Insomnia

Postby memom » Wed May 26, 2010 9:02 am

I am wondering if insomnia is a problem for any one else out there. My daughter suffers from it when she is having an "event". She will not be able to fall asleep until the wee hours of the night. Once asleep, she seems to rest well and will stay asleep for as much as ten hours. She tells me that her body just will not go to sleep. She says her mind is tired and wants to sleep, but she just can't do it.

Lauri
Mother of a beautiful 9 year old girl with CM 1.5, SM T 5-8 and Hypermobility. Decompressed 7/09.
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Re: Insomnia

Postby momsangel » Wed May 26, 2010 2:45 pm

I have been dealing with insomnia for years now, I can be both physically and mentally exhausted yet unable to sleep.Its very fustrating ,yet I am unsure if its related to my CM or not...........Not much help just letting you know there are others who have insomnia

I hope she finds away to rest!
CM1 dx July 2009
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Re: Insomnia

Postby Beverley » Fri Sep 03, 2010 9:31 am

While I know I am much older than your daughter. But, that is exactly the way I describe my insomnia.

I just do not get tired. I have tried all the tricks. Staying up all day and all night then all day the next day.
It is crazy. If I do try to lay down when I am not sleepy, I just toss and turn and end up coughing, sneezing ,itching etc. I cannot really read in bed as reading is difficult enough because finding a good position for my arms, head and neck iis necessary to read anyway.

I too can sleep for 10 hours pluse once I get to sleep but have found that if I get too much over 8-10 hours my back and hip start aching and I have to get up. My NL does not know quite what to make of it. I have had a sleep study and I do have obstructive Sleep Apnea but even with that it does not explain how I just don't get tired. Even more annoying is sometimes I think I am finally getting tired enough to lay down and then it is gone like it was my imagination or something.

I wish I could give you some good advice on this but really I have found nothing that really works. Even sleep aids just seem to make my body tired but not my brain and when they do kick in it just makes me feel like I am dragging a sand bags around with me all day the next day.

I think the biggest thing as a parent to be aware of the problem and try to not let it get too out of control as we all need sleep to help us grow and keep us healthy along with the fact that anyone that does not get enough sleep will definately be pushing buttons that we as parents don't really want pushed.

Beverley
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Re: Insomnia

Postby lttutrow » Fri Sep 03, 2010 4:54 pm

I agree, insomnia is an issue here too. My daughter has difficulty falling asleep, and even when she does, the littlest noises will wake her up. My son can fall asleep in a blink, but wakes up all night long and is a very restless sleeper, sleep study showed restless legs and sleep apnea, he had his tonsils out but still is restless.
I can remember discussing lack of sleep for my daughter at well child visits, way back when she was 1 or 2. She would lay awake on her bed, doing nothing, in the dark, for HOURS. I'd find her at 3 or 4AM just still laying there. The Dr. told us that as long as she wasn't up doing anything harmful, it doesn't matter if she sleeps or not, that she'd fall asleep when she was tired. Yeah right, not so much. At a recent visit with a specialist, we were told that her sleep is problematic, "so she should really work at getting better sleep." Really, ok Kaylee, now that you have permission, go get better sleep! LOL She goes to bed on time, but almost always has difficulty falling asleep. No lights on, no tv or ipod, she's not reporting feeling worried about things, no books she's trying to read, she's just awake.
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Re: Insomnia

Postby memom » Fri Sep 03, 2010 6:26 pm

MaryEmma has sleep problems too. She continues to say that "my brain has energy in it and I cannot turn it off and sleep." She slept the last four nights in a chair with her legs over the side because it hurt her back to lay flat. Today, she is forgetful and cannot articulate very well. I know her lack of sleep is "problematic" too. The NL who told Kaylee to try harder to sleep just does not get it.

I don't know what is more frustrating, watching my daughter endure all this or not being able to find answers to her questions. I am thinking of you and your family. Keep up the great work and support you provide to your family. You are not alone...

Lauri
Mother of a beautiful 9 year old girl with CM 1.5, SM T 5-8 and Hypermobility. Decompressed 7/09.
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Re: Insomnia

Postby lhaight » Sat Sep 04, 2010 4:10 pm

My son Matthew had surgery Aug. 9th of this year. He never had a problem going to sleep prior to surgery. He was all was one of those kids that went to sleep easily. Now he has started saying that he just can't get to sleep. We have found him sneaking tv, books and video games. He never did that before, but I think you can only lay there in the dark for so long. We have resorted to trying to stay with him until he falls asleep, but it is hard to stay up all those extra hours until he gets to sleep. I thought some of it was with his limited activity that he wasn't getting out all of his normal energy. Now I wonder if this is some type of side effect. My husband also had the decompression surgery, but has no sleeping problems other than his typical loud snore:) We go back the the neurosurgeon late Sept. I will see if any of his patients have experienced the same thing.
Until then it is sleep duty each night. Fortunately he does get to sleep before midnight and gets up okay for school.
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Re: Insomnia

Postby memom » Wed Oct 27, 2010 4:16 pm

MaryEmma's insomnia was terrible this past week. I called the ped doc to ask for something to help. She had been up until 4:00 am one to many nights! He told me to give her melatonian. I gave her 1 mg the first night which did not really work (it took her 2 hours to fall asleep). So the next night I gave her 1.5 mg. That did the trick. Within 30 minutes she was asleep. I jumped for joy!!! Her sleep was restless but she stayed asleep for 12 hours (no doubt - she had not slept well in days!) For the past five nights I have given her 1.5 mg and she is asleep within 30 minutes.

I read the latest study on PubMed.gov about meletonian (not many published studies out there). It seems that kids with neuro problems have good results taking it. Side effects include depression and night mares (she had nightmares last night). I am watching for depression, no signs so far. Other side effects are listed but mostly for kids who take high dosages. 1.5 mg's is considered a low dose. Ped Doc. says that is what they are prescribing as the first line of defense against insomnia these days.

The past few days have been wonderful in that she feels better and she can concentrate on her school work. The saying is true...what a difference a good night sleep makes! I hope this helps others too!

Lauri
Mother of a beautiful 9 year old girl with CM 1.5, SM T 5-8 and Hypermobility. Decompressed 7/09.
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Re: Insomnia

Postby lttutrow » Wed Oct 27, 2010 6:32 pm

YAY!!!!!!!! I'm really glad to hear she's able to sleep :) , and with the help of a medication that has very little risk. Thanks for sharing, we may give this a try when things settle down a little.
Praying for your family!
Lori
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Re: Insomnia

Postby medicpt » Wed Oct 27, 2010 7:13 pm

Yes, having some insomnia problems here as well.... she is 3, but I know she is tired, she acts tired. She just says "Mommy I can't fall asleep." She had her decompression and although her apnea appears much approved, the sleep habits are not much improved. So, I wonder if it is insomnia. Thanks for the tip on Melatonin..... hmmm maybe we will try it.

Thanks All, wendi2
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Re: Insomnia

Postby youngwife » Mon Nov 01, 2010 11:17 am

Yes! My daughter, Rachael, has CM and SM (along with lots of other things), and also suffers with insomnia. My son, whom is undiagnosed at this point, also suffers from it as well.
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