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    Joined: Apr 2009
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    Originally Posted by Lori H.
    I don't think his headaches are related to this "close to being a chiari thing" because so many people in my family get these headaches and many of them were athletic when they were younger. Nobody in my family has hypotonia. My husband had a large family and none of them has hypotonia and they were all athletic and very intelligent. I did find others on the internet who were close to having a chiari but like my son, only had a few mild symptoms. These people had also ruled out all other possible causes.

    I just think it is really odd that we'd rule out the major symptom of chiari as being related but then use it as an explanation for what would be a less common set of symptoms.

    And, really it is impossible to say that anyone ruled out "all other possible causes" for hypotonia because it is a very vague symptom that could be causes by hundreds of different possible conditions.


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    One of the things that surprised me was that he could compose a poem when he was getting a migraine and had back pain from the brace and had to lie down. He said he could work on the poem that was due the next day while he was in bed if I acted as his scribe.

    Here are a few of the lines he dictated to me: "Sky shades changed from blue to gray as I walked a path of slow decay" which sounds like it is coming from a severely depressed person but he was not depressed, he just hurt and the "as I walked a path of slow decay" expressed exactly what I felt we had been doing lately and I couldn't get that out of my mind. The assignment was to write a poem to match the tone of a piece of art or music. He listened to an anime song about a journey and used that. He only dictated about half of it and the next morning before class he finished writing it and had it typed in time to go to class. I thought it was good, but then I am not a writer. He had typed the lines of the poem so that it made the shape of an arrow pointing East. His teacher gave him a 100 A+. I couldn't get him to write at all for me and this is the first class he had taken that required writing since he was in kindergarten.

    Another line he dictated to me was "as I slowly tire like an animal caught on a tangled wire." The teacher commented that she liked that one. He has used a tangled wire metaphor in talking to me when describing the glitch that happens sometimes when he writes and plays piano.

    One bad thing about this is that now he thinks he can procrastinate and write well enough to please his teacher even though he waits until the last possible minute.

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    Originally Posted by Lori H.
    Another line he dictated to me was "as I slowly tire like an animal caught on a tangled wire."

    That's beautiful. Thanks for sharing his journey.

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