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Family with the sick baby

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  • Pat or Sarah
    My heart goes out to this family with the 4 month old with liver problems. Thanks to everyone for their support. Sarah
    Message 1 of 4 , Jul 30, 2007
      My heart goes out to this family with the 4 month old with liver problems.  Thanks to everyone for their support.  Sarah
    • Sally Eubanks
      Hi everyone-- I wrote a message a little while ago about my son, Oscar. He is 4 months old, still in ICU, and undiagnosed. The muscle biopsy (taken at 4
      Message 2 of 4 , Jul 31, 2007
        Hi everyone--

        I wrote a message a little while ago about my son,
        Oscar. He is 4 months old, still in ICU, and
        undiagnosed. The muscle biopsy (taken at 4 weeks old)
        came back negative for myopathy, and the genetic test
        for MTM just came back negative as well. However, we
        (and a neurologist who was called in to consult in
        this case) are convinced that he has MTM. Just to
        remind everyone, I am an American living in Austria.
        We've only been here for a year, and I'm a little bit
        lost both in the language and the medical system.
        They are now considering a second muscle biopsy. Does
        anyone know of any doctors we could consult, or have
        any suggestions about something we could ask our
        medical staff to do in order to help with a diagnosis?
        I would also be interested to hear if there are any
        diseases that look JUST like MTM, but are something
        else.

        Thanks in advance
        Sally



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      • Wendy
        Hi Sally, There are other conditions which look like MTM with a central nucleus – a few of the congenital neuromuscular conditions have a similar appearance.
        Message 3 of 4 , Jul 31, 2007

          Hi Sally,

           

          (Message over 64 KB, truncated)

        • Dana
          Hi Sally!! My prayers are with you and Oscar and I hope that you get a dx soon. Most of us can relate to the frustration of just wanting to know why and what.
          Message 4 of 4 , Jul 31, 2007
            Hi Sally!! My prayers are with you and Oscar and I hope that you get
            a dx soon. Most of us can relate to the frustration of just wanting
            to know why and what. Unfortunately, I do not have any brilliant
            answers or even suggestions but I did want to share with you that my
            son, Cason, had a muscle biopsy when he was 4 weeks old also.
            Everything they tested for came back negative and the neuro we had
            said that happens alot in newborns as there muscle is too inmature?!
            He explained to us that a more accurate biopsy could be done when
            Cason was around 6 months old. Cason had such problems with
            anesthesia that we did not do a 2nd biopsy until he was 2 yrs old. It
            was then that we received the MTM dx. I am sorry that I could not be
            a bigger help and I hope that you get the answers that you seek soon.
            God Bless. Dana and Cason

            --- In Myotubular_Myopathy@yahoogroups.com, Sally Eubanks
            <sallyeu@...> wrote:
            >
            > Hi everyone--
            >
            > I wrote a message a little while ago about my son,
            > Oscar. He is 4 months old, still in ICU, and
            > undiagnosed. The muscle biopsy (taken at 4 weeks old)
            > came back negative for myopathy, and the genetic test
            > for MTM just came back negative as well. However, we
            > (and a neurologist who was called in to consult in
            > this case) are convinced that he has MTM. Just to
            > remind everyone, I am an American living in Austria.
            > We've only been here for a year, and I'm a little bit
            > lost both in the language and the medical system.
            > They are now considering a second muscle biopsy. Does
            > anyone know of any doctors we could consult, or have
            > any suggestions about something we could ask our
            > medical staff to do in order to help with a diagnosis?
            > I would also be interested to hear if there are any
            > diseases that look JUST like MTM, but are something
            > else.
            >
            > Thanks in advance
            > Sally
            >
            >
            >
            >
            ______________________________________________________________________
            ______________
            > Building a website is a piece of cake. Yahoo! Small Business gives
            you all the tools to get online.
            > http://smallbusiness.yahoo.com/webhosting
            >
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