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Newly Diagnosed

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  • Helene
    Hi. My 13 month old so was diagnosed this past Thursday. Would like to communicate with others who could offer me advice. Helene
    Message 1 of 6 , Feb 11, 2001
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      Hi. My 13 month old so was diagnosed this past Thursday. Would like
      to communicate with others who could offer me advice.

      Helene
    • tifny1972@aol.com
      Hello. I am an occupational therapist working with children with various disabilities. I have worked very closely with a boy, who is now 3, since he was 17
      Message 2 of 6 , Feb 13, 2001
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        Hello. I am an occupational therapist working with children with various
        disabilities. I have worked very closely with a boy, who is now 3, since he
        was 17 months old. If you have any questions, feel free to email me. I will
        answer to the best of my ability. I had never heard of myotubular myopathy
        before working with this sweet little boy. Let me know if you need anything.
        Tiffany
      • mlhayes99@aol.com
        Helene, My nephew wasn t diagnosed until he was a year old as well. He is now 5 1/2 yrs. old. I may be able to help you with any questions you may have, as
        Message 3 of 6 , Feb 14, 2001
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          Helene,
                My nephew wasn't diagnosed until he was a year old as well.  He is now
          5 1/2 yrs. old.  I may be able to help you with any questions you may have,
          as for over the years I have learned a lot about this rare condition.

          Jessica
        • robert.shapiro@chase.com
          ... like ... Hi, My son Jay Jay has X-linked Myotubular Myopathy. He will be 4 in July. He attends public school 4-5 days a week for 2 hours a day. He gets 2
          Message 4 of 6 , May 25, 2001
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            --- In Myotubular_Myopathy@y..., "Helene" <rhccr@o...> wrote:
            > Hi. My 13 month old so was diagnosed this past Thursday. Would
            like
            > to communicate with others who could offer me advice.
            >
            > Helene

            Hi,
            My son Jay Jay has X-linked Myotubular Myopathy. He will be 4 in
            July. He attends public school 4-5 days a week for 2 hours a day.
            He gets 2 hours of OT PT and Speech a week. He can sit unsupported by
            himself and he is starting to talk a lot just now. He knows all his
            letters numbers and colors. He has a Traech and had a Laproscopic
            fundoplication both done when he was a few months old. He as a Passey
            muir valve and gets TES therapy every night. If you want more
            information about any of these things or just want to talk let me
            know. Bob
          • robert.shapiro@chase.com
            ... like ... Hi, My son Jay Jay has X-linked Myotubular Myopathy. He attends public school 5 days a week for 2 hours a day. He will be 4 in July. He has a
            Message 5 of 6 , May 25, 2001
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              --- In Myotubular_Myopathy@y..., "Helene" <rhccr@o...> wrote:
              > Hi. My 13 month old so was diagnosed this past Thursday. Would
              like
              > to communicate with others who could offer me advice.
              >
              > Helene

              Hi,
              My son Jay Jay has X-linked Myotubular Myopathy. He attends public
              school 5 days a week for 2 hours a day. He will be 4 in July. He has
              a traech and had a Laproscopic Fundoplication. Both were done when he
              was a few months old. He was diagnosed at 1 month old and is part of
              Gail Herman's study. He can sit by himself unsupported and he has
              started to talk alot lately. He has a Passey Muir Valve. He is on
              a Vent at night. It is a Pumonetics 950. This vent is about the size
              of a laptop PC so it is convienient for traveling. It has a
              cigarrette lighter attachment for the car. If you want to know more
              about any of these things or if you just want to talk let me know.
              Bob
            • bubblelips8151972
              ... has ... he ... of ... on ... size ... more ... So your son is 4? My son too is on a LTV 950 which I think is great. Is he saying words? Sentences? What
              Message 6 of 6 , Feb 2, 2007
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                --- In Myotubular_Myopathy@yahoogroups.com, robert.shapiro@... wrote:
                >
                > --- In Myotubular_Myopathy@y..., "Helene" <rhccr@o...> wrote:
                > > Hi. My 13 month old so was diagnosed this past Thursday. Would
                > like
                > > to communicate with others who could offer me advice.
                > >
                > > Helene
                >
                > Hi,
                > My son Jay Jay has X-linked Myotubular Myopathy. He attends public
                > school 5 days a week for 2 hours a day. He will be 4 in July. He
                has
                > a traech and had a Laproscopic Fundoplication. Both were done when
                he
                > was a few months old. He was diagnosed at 1 month old and is part
                of
                > Gail Herman's study. He can sit by himself unsupported and he has
                > started to talk alot lately. He has a Passey Muir Valve. He is
                on
                > a Vent at night. It is a Pumonetics 950. This vent is about the
                size
                > of a laptop PC so it is convienient for traveling. It has a
                > cigarrette lighter attachment for the car. If you want to know
                more
                > about any of these things or if you just want to talk let me know.
                > Bob


                So your son is 4? My son too is on a LTV 950 which I think is great.
                Is he saying words? Sentences? What exactly is he saying with the
                passy muir? My son too wears it but only makes sounds. He is going
                to be 4 in April.
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