Chiari /Sleepiness

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

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Chiari /Sleepiness

Postby Bear » Thu May 29, 2008 6:11 pm

I was just wondering if anyone else's child gets sleepy during the day. My daughter gave naps up when she was 3, (she's 6 now). In the past couple of weeks she is getting sleepy in the afternoon and napping again. Her nighttime sleep habits haven't changed. The only new thing is her wanting to nap again. Has anyone else had this happen with their child? She has Chiari Malformation I.
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Re: Chiari /Sleepiness

Postby Beach4me » Fri May 30, 2008 5:55 am

This was the first thing that I really noticed about my dd, age 13, before the diagnosis. She slept all the time. We kept going to the Dr. They did blood work 3 different times and kept saying it was her age.

Then the headaches and other symptoms became "louder". Come to find out, she has had them for a long time. She just thought they were "normal". It was not until we and the Dr. pointed out that they were not, did we start to get to the bottom of CM1.

At least 3-4 times a week, she comes home and sleeps for 2 to 3 hrs. Wakes up, eats, does homework, watches a TV show and then goes to bed around 9. Exhausted the next morning still. This has been going on for about 2 yrs now. She will have surgery in 2 weeks.

She says that she can never get comfortable and that her body hurts all the time. She wakes up a lot thru out the night. It is never a deep, restful sleep. She has to try really hard to concentrate in school, which uses even more energy.

Sorry so long. Hope this helps.
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Re: Chiari /Sleepiness

Postby lttutrow » Fri May 30, 2008 6:21 pm

My 9 y.o. does the same thing, three or four days a week, he is napping for 3 or 4 hours. When he is awake, he can have lots of energy at times, but it usually only lasts for short bursts. I also have heard that people with CM have sleep issues, and at his sleep study last month, he was diagnosed with a sleep disturbance, a high periodic leg movement index, and some sleep apneas. I spoke with another parent of a child who had PFD about 4 months ago, and she said her child is now sleeping better and seems to have more energy when she is awake.
Lori
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Re: Chiari /Sleepiness

Postby Beach4me » Sat May 31, 2008 8:29 am

They had my daughter set up for a sleep study until the MRI clearly showed CM1, then they canceled it. It would have been very interesting to have seen the results of the sleep study. Kindof like before and after surgery comparison.

She was a great sleeper up until about age eight. Then she began to wake up many times thru the night. Looking back...it all adds up.

On days that the symptoms are mild, she bounces off the wall! The energy is way too much. But then on the bad days, you can hardly scrape her off the couch.
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Re: Chiari /Sleepiness

Postby Bear » Sat May 31, 2008 10:07 pm

Thanks for the replies. My daughter is the exact same way with energy. Some days it's there 100%, but other days she wants to lay on the couch. She is seeing a cardiologist in a couple of weeks because she has been having some chest discomfort. The neurologist and neurosurgeon thought it best to be checked by the cardiologist. I think I will mention the sleepiness to her.
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Re: Chiari /Sleepiness

Postby lttutrow » Sat May 31, 2008 11:44 pm

You mention the "bouncing off the wall"... We've noticed that Keegan has this right before he has a huge crash and generally a huge headache or acts just like he has the huge headache without the headache. It's not that he misbehaves or is mean, just an enormous amount of energy!! We asked the NL about this, and she said it's common with migraines because of the changes in the brain at the beginning of one. I really don't know how much of his headaches are "migraines" vs. Chiari/CSF issues, but maybe the same principle applies regardless??
Lori
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Re: Chiari /Sleepiness

Postby jonesjam » Fri Jun 06, 2008 9:15 pm

hey, i had the same problems. i would sleep all the time and still feel exhausted. When i would come home from school i would take a nap and maybe do alittle homework and thats all. we went to go see a ns and got an mri when i started getting really bad headaches. thats when they discovered the cm. i've had one surgery and have to go back again in two weeks so hopefully this time ill feel better.
hope all goes well
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Re: Chiari /Sleepiness

Postby Sara » Sat Jun 07, 2008 5:01 am

Intracranial hypertension, or raised intracranial pressure often causes excessive sleepiness in kids. My twins have this condition. It can be very serious and one way to check for it is to have the eye examined by a nuero opthalmologist. They can determine if there is any swelling of the optic nerve. this condition is serious and can result in vision loss. Symptoms include headaches, irribility, sleepiness, visual distortion and nausea, vomitting. You might was to ask your doctor to check out this possibility.
Sara
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Re: Chiari /Sleepiness

Postby Bear » Sun Jun 08, 2008 2:29 am

[quote="Sara"]Intracranial hypertension, or raised intracranial pressure often causes excessive sleepiness in kids. My twins have this condition. It can be very serious and one way to check for it is to have the eye examined by a nuero opthalmologist. They can determine if there is any swelling of the optic nerve. this condition is serious and can result in vision loss. Symptoms include headaches, irribility, sleepiness, visual distortion and nausea, vomitting. You might was to ask your doctor to check out this possibility.
Sara[/quote]

I never would have thought of this. She is due for an eye exam. My daughter has been moody lately, but we thought is was because she has been tired. She is scheduled to see the cardiologist on Monday. I will see if they can recommend a neuro opthalmologist for her. Thanks for the info!
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