Not sleeping & problems eating

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

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Not sleeping & problems eating

Postby tldrake14 » Mon May 03, 2010 2:26 pm

My 13-year-old son, Aaron, had decompression surgery on March 31 with a Dura patch and removal of the top vertebrae. He did great during surgery - recovery...not so great. They got his vomitting under control after 2 days but the pain....wow! We were not prepared for the pain! After 5 days in the hospital, he was sent home on Norco and Tramadol. He was still having what I considered "abnormal" pain, problems keeping food in his stomach, and wasn't sleeping. The pain is pretty much gone now but we are still having problems keeping food in his stomach (not vomitting - just diarhhea). He is little for his age to start with and since surgery has lost 8 lbs. On top of everything, he isn't sleeping! Most days he is up for 18-20 hours. Over the weekend he was up for 30 hours and when he did finally fall asleep, it was only for 9 hours. That might sound like a long time but considering that since we came home from the hospital, he sleeps usually only 5 hours a night. How is he supposed to truly recover when his body won't rest?

We have tried boring books, classical music, hypnosis, warm milk, Melatonin, etc. Everything seems to work for ONE night, then poof, it doesn't work again. We saw the NP 3 weeks post-op and have followed her suggestions. We don't see the doc again until the 20th. That is a long time when you are sleep deprived. Of course, with the sleep deprivation comes depression so it is a dangerous double-edged sword.

Suggestions? Advice?

Trinette Drake
San Antonio, TX
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Re: Not sleeping & problems eating

Postby Catherine » Mon May 03, 2010 8:17 pm

As I was reading your post my 4 year old, who had decompression on 2/23 threw up right next to me. We are still having some problems obviously. The NS thinks that it is related to the patch that was used. He has never had problems before but suddenly in the past few months has had 3 cases that have had trouble with the patch, and the other NS he works with has had several as well. Our patch came from Bovine material. If you know what material your patch came from we are trying to find out if others are having problems with this patch.

Slowly Catherine is recovering. Good luck, I hope your son will recover soon.

Crystal
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Re: Not sleeping & problems eating

Postby drummergrl » Tue May 11, 2010 9:14 pm

I had the same surgery a few years ago when I was 16 and had similar problems with food. I don't have any spectacular suggestions- over time it just got better, though my issues didn't last as long as your son's are. The sleeping thing must be so difficult...I am really feeling for you guys!

Is he up to seeing friends and just hanging out with people his age? I found that despite my physical condition at the time, just being near my friends kept off the depression as much as possible. I know he's in some extraordinary circumstances but the mind has a funny way of helping the body, and sometimes a good distraction like laughter and time with friends can really help. I'm sorry I can't offer any great advice, but I am certainly thinking of you! I hope you get some answers soon and that he turns the corner quickly!
CM, SM, Scoliosis
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