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a referral to Mayo Clinic

Nov 25, 2009 - 0 comments
Tags:

Mayo Clinic

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Pain

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chiari I malformation

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referral



My daughter continues to feel terrible. Her head, neck, back, and legs hurt so much that she cries several times a day. We took her back to the NL yesterday and she found the something strange going on with her reflexes. When her left knee was checked her right leg moved almost as much as the left one. The NL repeated this test several times with the same results. She said this means she has some nerve involvement from her spine or incision area. My daughter will have  a full spine MRI next week. The imaging center said this procedure is over 4 hours long, so they are making us get the MRI in three sections, Tues, Wed, and Thurs. Whatever works! The NL also referred us to Mayo Clinic. We should get a call next week with the exact date. I think we may finally be getting somewhere. : )  The NL also prescribed Neurontin. It's sort of inconvenient to take because it's 3X per day, but if it helps my daughter's pain it will be worth it.

finally heard back from the neuro surgeon

Oct 27, 2009 - 1 comments
Tags:

Chiari

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Headaches

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CSF leak



Wow! We finally heard back from the NS office. The nurse called today, 6 days after the lumbar puncture. She said the NS doesn't think my daughter needs anything more than steroids to try to take care of the recurring bulge on the back of her head. The bulge has gone away twice after two different lumbar punctures, but it is coming back again. The neurologist thinks my daughter is having a reaction to the patch used to close the dura. I finally gave up in the current NS and made an appointment at the University of Minnesota. It must have been a miracle, but they just had a cancellation and she will be seen on Tuesday, Nov. 3rd. That's quick! Hopefully they will be able to help her. I'm worried about her schoolwork. She has missed almost the whole first quarter.

home from the hospital again

Oct 12, 2009 - 0 comments
Tags:

Pain

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meningitis

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Headache

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chiari I malformation

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white blood cells

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red blood cells

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Fever

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Arthritis

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inflammation



We just got back from another stay in the hospital. A large bulge filled with spinal fluid brought us to the neurosurgeon. He ordered a lumbar puncture and an MRI. The lumbar puncture showed white blood cells, red blood cells, and an abnormal amount of glucose in the spinal fluid. The white cells of a normal healthy person would number 0-3, but Taylor had over 30 white blood cells in her spinal fluid sample. They called it aeseptic meningitis. She was dizzy, had headaches, and a fever. She's home and still has low grade fevers, but she will see an infectious disease specialist and a pediatric rheumatologist. She has had x-rays and blood tests to look for inflammation, but the hospitalist thought her fevers are a sign of inflammation and not infection. She said some kids have arthritic symptoms before lab tests show anything. We will forge on trying to get answers for our daughter. We won't give up until she is pain free.

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!!!