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Cerebral Palsy and nerve pain..

Laurie - posted on 08/21/2009 ( 2 moms have responded )

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Hello, My son Chase has been having spells where he will Cry constantly for days with no sleep. We have been admitted to the hospital 6 times since spring trying to figure out what the cause of his pain and discomfort is coming from. The last visit they put him on NEUROTIN a nerve medication. It seemed to be working very well. I thought we had finally pinpointed the problem. He has begun crying again and not being able to sleep. The doctors have now prescribed Ativan for pain that I can give at home, but this is just a band-aid I feel. Has anyone else's child experienced this and found out what it was?? Chase is non verbal so we never really know the REAL problem. I know it may be a long shot, but I am desperate.

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Heather - posted on 08/25/2009

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Hi, I have a daughter with CP and she cries EVERY evening after school when I transfer her from her wheelchair (where she has sat for 9 hours) into her bed. I have come to the conclusion she gets cramp in her calf muscles and if you have ever had that you will know how much that hurts. I now rub her legs as I am hoisting her from her chair to her bed and if I cannot calm her I rub a little deep heat into her muscles and this seems to do the trick. I have never put her on medication for the problem as she has enough already. She is also non verbal. I hope you manage to help Chase ease his pain.

Heather - posted on 08/21/2009

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I would try to find a pediatric pain interventionalist. My mom has nerve pain and is going to a pain clinic to manage it. They've done various testing to see what's going on with her. Apparently there are 5 different nerve pathways and there are different meds that work with each pathway, so it could be the Neurotin worked for one pain and now he needs something for the other type? Just guessing here.. Hope this helps and that you get some sleep soon.

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