Severe fatigue/sleepiness??

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

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Severe fatigue/sleepiness??

Postby Gracie Rose » Sat Jan 05, 2008 11:47 pm

Hi,

Do any of your children have severe fatigue with ACM/TCS/EDS ?
Our son is 17 and has multiple heart problems due to EDS and we thought his extreme fatigue was heart related. We had his meds changed to one with no sedating effect, he's had a stress test, and the fatigue is still just awful.

He sleeps well at night but still falls asleep anywhere from 4-6 times a day...sitting up, doing school work, in the car, during movies, anytime. He says he just has no umpf.

Would love some answers....

Lisa
Gracie Rose
 
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Postby lalaswihart » Sun Jan 06, 2008 12:10 am

My daughter always complains of been tired but yet she has trouble falling and staying asleep. She has CM1/SM and EDS and is 8 she has a murmur and some times her heart staets racing, they said that is from a combinatio of EDS and the dent in her brain stem and CM. She also always wake up at night.

This has gotten a little better since her Decompression and Tether cord surgeries she had at TCI, but i always find the days that it is not she has been more active nd over done it after all she is an 8 year old. We have found that above and beyond meds.as simple as it sounds a hot shower and or bath (which is some times repeated through the night) helps. I feel bad for your Son and for you, sometime i feel as if i have a newborn again.

Hope you both catch up on some zzzzzzzzz soon,
Laurie
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