Symptoms keeping her up at night

[Karebear75]

My daughter is 7. She was diagnosed with chiari in November and had decompression and duraplasty in April.  The abdominal pain and chronic nausea are almost completely gone and she's even gained a little weight,  which is great,  but when she tries to go to sleep the leg pain,  arm pain,  headache and feeling hot Keep her from being able to sleep. Her body feels like it's on fire all over.  I have to give her cold compresses to cool her down.  Even in the hospital after her surgery they kept thinking she had a fever because the scanner would say 102, but when they would take under her tongue it was normal.  She's up until 2am or later almost every night.  She refuses medication,  and so I don't know what else to do for her.  Anyone else have these symptoms and is there anything else I can do to help her feel better? I feel helpless and hate watching her suffer.  

[selmaS]

  Hi Karebear and welcome to the Chiari forum.

I am wondering how her bladder and bowel are working....the reason I ask is I was DX with a neurogenic bladder after my decompression and I asked why I get hot all over and was told that was my bladder...instead of feeling like I had to go, I get hot.....have her try to relieve her bladder when she gets hot to see if she cools down, Good luck