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Now what?!?!

Oct 04, 2009 - 0 comments
Tags:

chiari I

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chiari I malformation

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Fever

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small red blood cells

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Mouth sores

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rapid pulse

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Headache

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orthostatic hypotension



Taylor had her posterior fossa decompression surgery for a Chiari I malformation on August 14, 2009. We were hoping she would have the same miraculous recovery that her brother had after his surgery. (Oct. 28, 2008) Taylor has been dizzy, low grade fevers at least every other day, a rapid pulse rate, orthostatic hypotension, and now they found small red blood cells. Her white count is fine and her electrolytes were good, but we don't know where to turn. She will see her neurosurgeon on Tuesday because she has a fluid filled bulge at the incision site and some large painful lymph nodes up the back of her neck and head. Her recurrent mouth sores and terrible headaches are her most severe symptoms. She's just ten years old and needs to get back to school and playing with friends. What do we do next? We just don't know where to turn. She saw a pediatric neurologist two weeks ago and she upped her amitriptyline to 60 mg per day, with no change in headaches since then. Taylor is down to 62 pounds, which isn't much for a small boned 10 year old. Her pre-symptom weight about a year ago was 75 pounds. Taylor is afraid to go to sleep some nights because she hurts so much that she's afraid she won't wake up in the morning. I need to help my daughter, but I feel like we're running out of options. Noone knows what's wrong with her. There was mention of some type of anemia possibly, but nothing was done. Help!!!

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