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Thread: Adding to post below regarding DS (CP mentioned)???

  1. #11
    Val. is offline INCIIDer - A Community Creator
    Join Date
    Jan 2006
    Posts
    3,854

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    Interesting post above. My low tone boy freaks out like he's being sliced open when he gets a shot. But...he went for three days with a broken leg and we didn't have any idea. You're very right about those isolated little "symptoms" they find, too. We had so many little things...and had genetic work-ups done. They said, You just have a child with a lot of little oddities that all add up to no known genetic disorder.

  2. #12
    Join Date
    Apr 2008
    Posts
    79

    Default I think you are right about the Zebra Quote...

    I talked to PT yesterday after getting the blood test results. She said she only did those tests because I mentioned CP? Hello, don't they have a standard set of tests they perform on their clients? Once her report is finalized and they schedule PT services for Joey, we will reuest another PT.

    The OT today said, Joey had Hypotonic Muscle Tone. J crawled, sat, pulled up, walked months before A and older DS. So, I don't get the low muscle tone thing.

    Does your daughter walk on her toes? Does she have strong calves? Just curious.

    Thanks for your input, concern and advice.

    I always appreciate feedback from others.

    Gail

  3. #13
    Join Date
    Apr 2008
    Posts
    79

    Default DS's Blood Test for Creatine Levels came back normal :-)

    We are so relieved that Anything over 1000 is a Marker for MD. His number was 163.



    Thanks for your prayers and support.



    Now, to await the dreaded MRI. We will probably not schedule it until after the Holidays.



    Huggs - Gail

  4. #14
    Join Date
    Jun 2006
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    420

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    Great news! I agree, huge relief. Keep us posted on the MRI. Are you actually starting PT?

    Lisa

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