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RE: [Myotubular_Myopathy] Our Identical Twins with XLMTM are starting to walk at 19 months.

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  • Wendy
    Hi I can t see any reason why they would lose the ability to walk. The only time that Zak lost that ability was when he was 3 years old and had chicken pox,
    Message 1 of 13 , Mar 16, 2007
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      Hi

      I can’t see any reason why they would lose the ability to walk. The only time that Zak lost that ability was when he was 3 years old and  had chicken pox, lung collapse and pneumonia and was off his feet for about a month altogether, and had an IV canula in his

      (Message over 64 KB, truncated)

    • Spampinato, Rosemary
      Thank you Wendy. I don t think I have to explain to you how that makes me feel. I feel lucky and blessed, still a little confused, but ultimately thankful. I
      Message 2 of 13 , Mar 16, 2007
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        Thank you Wendy.
        I don't think I have to explain to you how that makes me feel. I feel lucky and blessed, still a little confused, but ultimately thankful.
         
        I think you have Zak's pictures posted. When your family was in Paris. Beautiful and inspirational. I imagine you get the wheel chair for long distances.
         
        -----Original Message-----
        From: Myotubular_Myopathy@yahoogroups.com [mailto:Myotubular_Myopathy@yahoogroups.com]On Behalf Of Wendy
        Sent: Friday, March 16, 2007 2:02 PM
        To: Myotubular_Myopathy@yahoogroups.com
        Subject: RE: [Myotubular_Myopathy] Our Identical Twins with XLMTM are starting to walk at 19 months.

        Hi

        I can’t see any reason why they would lose the ability to walk. The only time that Zak lost that ability was when he was 3 years old and  had chicken pox, lung collapse and pneumonia and was off his feet for about a month altogether, and had an IV canula in his foot (as that was the only decent vain they could find).  In retrospect, we should have encouraged him to stand in a standing frame to keep the ability/muscles working.  However, even after losing strength in his trunk and leg muscles for a while, he did regain the ability to walk again after a few months.  He is still a very proficient walker (age 11) although he doesn’t like to walk as far (unless he has a balloon or soft ball to kick along in which case he goes on and on and on for ages…..)  As a rough idea – he would walk about 2 / 3 miles sometimes 3 times a week at the age of 5!  The only reason that he wouldn’t manage that distance now – is solely due to the demands of being full time in school having a bigger weight to carry around and having a busy life!

        Take care, Wendy

        -----Original Message-----
        From: Myotubular_Myopathy @yahoogroups. com [mailto:Myotubular_ Myopathy@ yahoogroups. com] On Behalf Of Rosemary and Len Spampinato
        Sent:
        16 March 2007 17:24
        To: Myotubular_Myopathy @yahoogroups. com
        Subject: [Myotubular_ Myopathy] Our Identical Twins with XLMTM are starting to walk at 19 months.

        Yes, our sons Roman and Dante are both cruising. Roman has taken 5 or
        six steps on his own. Dante has been more cautious and is still holding
        on to everything.

        Are there other boys with MTM who've walked? Our guys were six weeks
        early and it doesn't seem that they are that far behind.

        We didn't think they were going to live let alone walk when they were
        born. Now, they are all over the place in their little cars and
        walker. Is this just temporary? Is this ability going to go away?
        I should be so happy but, I'm still so scared even if they start to
        walk later they may not be able. Is their walking this early a
        prediction they will be able to walk as an adult?

        Any comment would help.

        Thank you.

      • Wendy
        Definitely, we don t leave home without it! In fact we are faced with a new dilemma - we need a bigger car because we d like to take the wheelchair, electric
        Message 3 of 13 , Mar 16, 2007
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          Definitely, we don’t leave home without it!  In fact we are faced with a new dilemma – we need a bigger car because we’d like to take the wheelchair, electric scooter and  
          (Message over 64 KB, truncated)

        • Spampinato, Rosemary
          Well skipping the line is a silver lining. What a funny predicament. Is he able to go for a full day of school without the wheelchair? ... From:
          Message 4 of 13 , Mar 16, 2007
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            Well skipping the line is a silver lining. What a funny predicament. 
            Is he able to go for a full day of school without the wheelchair?
            -----Original Message-----
            From: Myotubular_Myopathy@yahoogroups.com [mailto:Myotubular_Myopathy@yahoogroups.com]On Behalf Of Wendy
            Sent: Friday, March 16, 2007 3:03 PM
            To: Myotubular_Myopathy@yahoogroups.com
            Subject: RE: [Myotubular_Myopathy] Our Identical Twins with XLMTM are starting to walk at 19 months.

            Definitely, we don’t leave home without it!  In fact we are faced with a new dilemma – we need a bigger car because we’d like to take the wheelchair, electric scooter and  hippocampe” (Hippocampe is a brilliant contraption designed in france – accommodating  a child* to adult.  It goes straight into the sea or swimming pool and floats.   You can even get skis for it!!)!  I can highly recommend Paris for disability access if you ever get the urge to take your boys – its wonderful, beautiful city and people are so helpful towards anyone with a disability. By taking the wheelchair we could walk to all the museums and places of interest and then Zak would get out and walk!  In fact, we felt huge frauds because having been ushered by the stewards and skipping about a 3 hour queue to go up the Eiffel tower Zak just got out of his wheelchair in the lift and asked to walk up the steps to the next deck!! How embarrassing!  I really wish I could say the same for London, although don’t let it put you off as things are improving dramatically especially with the new DDA laws……..we notice a difference every time we go in.  

            *NB: children do need good lumbar control to be able to sit comfortably in it.

            -----Original Message-----
            From: Myotubular_Myopathy @yahoogroups. com [mailto:Myotubular_ Myopathy@ yahoogroups. com] On Behalf Of Spampinato, Rosemary
            Sent: 16 March 2007 18:23
            To: Myotubular_Myopathy @yahoogroups. com
            Subject: RE: [Myotubular_ Myopathy] Our Identical Twins with XLMTM are starting to walk at 19 months.

            Thank you Wendy.

            I don't think I have to explain to you how that makes me feel. I feel lucky and blessed, still a little confused, but ultimately thankful.

            I think you have Zak's pictures posted. When your family was in Paris. Beautiful and inspirational. I imagine you get the wheel chair for long distances.

            -----Original Message-----
            From: Myotubular_Myopathy @yahoogroups. com [mailto:Myotubular_ Myopathy@ yahoogroups. com]On Behalf Of Wendy
            Sent: Friday, March 16, 2007 2:02 PM
            To: Myotubular_Myopathy @yahoogroups. com
            Subject: RE: [Myotubular_ Myopathy] Our Identical Twins with XLMTM are starting to walk at 19 months.

            Hi

            I can’t see any reason why they would lose the ability to walk. The only time that Zak lost that ability was when he was 3 years old and  had chicken pox, lung collapse and pneumonia and was off his feet for about a month altogether, and had an IV canula in his foot (as that was the only decent vain they could find).  In retrospect, we should have encouraged him to stand in a standing frame to keep the ability/muscles working.  However, even after losing strength in his trunk and leg muscles for a while, he did regain the ability to walk again after a few months.  He is still a very proficient walker (age 11) although he doesn’t like to walk as far (unless he has a balloon or soft ball to kick along in which case he goes on and on and on for ages…..)  As a rough idea – he would walk about 2 / 3 miles sometimes 3 times a week at the age of 5!  The only reason that he wouldn’t manage that distance now – is solely due to the demands of being full time in school having a bigger weight to carry around and having a busy life!

            Take care, Wendy

            -----Original Message-----
            From: Myotubular_Myopathy @yahoogroups. com [mailto:Myotubular_ Myopathy@ yahoogroups. com] On Behalf Of Rosemary and Len Spampinato
            Sent: 16 March 2007 17:24
            To: Myotubular_Myopathy @yahoogroups. com
            Subject: [Myotubular_ Myopathy] Our Identical Twins with XLMTM are starting to walk at 19 months.

            Yes, our sons Roman and Dante are both cruising. Roman has taken 5 or
            six steps on his own. Dante has been more cautious and is still holding
            on to everything.

            Are there other boys with MTM who've walked? Our guys were six weeks
            early and it doesn't seem that they are that far behind.

            We didn't think they were going to live let alone walk when they were
            born. Now, they are all over the place in their little cars and
            walker. Is this just temporary? Is this ability going to go away?
            I should be so happy but, I'm still so scared even if they start to
            walk later they may not be able. Is their walking this early a
            prediction they will be able to walk as an adult?

            Any comment would help.

            Thank you.

          • kristin cypher
            Hi Rosemary: First of all - BIG congratulations on the boys beginning to walk! Sebi took his first steps at 18 months, and is now a great walker. We do not
            Message 5 of 13 , Mar 16, 2007
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              Hi Rosemary:
               
              First of all - BIG congratulations on the boys beginning to walk!  Sebi took his first steps at 18 months, and is now a great walker.  We do not use a wheelchair, but he is still small enough that if he gets tired, we just carry him.  Still, I find my reserves typically run out before Sebi's do!  ;)  My brother, too, has MTM (milder) and he walked at 13 months, and has never needed additional support (he is now 30).  So, although you never really know what will happen, it sounds like your boys are doing so well and will be great walkers!
               
              Again, such great news!
              Kristin

              Rosemary and Len Spampinato <spampinator@...> wrote:
              Yes, our sons Roman and Dante are both cruising. Roman has taken 5 or
              six steps on his own. Dante has been more cautious and is still holding
              on to everything.

              Are there other boys with MTM who've walked? Our guys were six weeks
              early and it doesn't seem that they are that far behind.

              We didn't think they were going to live let alone walk when they were
              born. Now, they are all over the place in their little cars and
              walker. Is this just temporary? Is this ability going to go away?
              I should be so happy but, I'm still so scared even if they start to
              walk later they may not be able. Is their walking this early a
              prediction they will be able to walk as an adult?

              Any comment would help.

              Thank you.



              Don't pick lemons.
              See all the new 2007 cars at Yahoo! Autos.

            • Wendy
              Absolutely, he still does. I think secondary (mainstream) schooling will be demanding which is why we got the scooter - so he can scoot to lessons then get off
              Message 6 of 13 , Mar 16, 2007
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                Absolutely, he still does. I think secondary (mainstream) schooling will be demanding which is why we got the scooter – so he can scoot to lessons then get off and walk in and still be there at the same time as his friends.  But a primary he’s always been without wheelchair – usually, we push it around after him on school trips too!!  It’s a good bag-carrier if nothing else!

                 

                 

              • Spampinato, Rosemary
                GOD BLESS YOU Kristen. You just made my life better and gave my future hope. ... From: Myotubular_Myopathy@yahoogroups.com
                Message 7 of 13 , Mar 19, 2007
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                  GOD BLESS YOU Kristen. You just made my life better and gave my future hope.
                  -----Original Message-----
                  From: Myotubular_Myopathy@yahoogroups.com [mailto:Myotubular_Myopathy@yahoogroups.com]On Behalf Of kristin cypher
                  Sent: Friday, March 16, 2007 4:20 PM
                  To: Myotubular_Myopathy@yahoogroups.com
                  Subject: Re: [Myotubular_Myopathy] Our Identical Twins with XLMTM are starting to walk at 19 months.

                  Hi Rosemary:
                   
                  First of all - BIG congratulations on the boys beginning to walk!  Sebi took his first steps at 18 months, and is now a great walker.  We do not use a wheelchair, but he is still small enough that if he gets tired, we just carry him.  Still, I find my reserves typically run out before Sebi's do!  ;)  My brother, too, has MTM (milder) and he walked at 13 months, and has never needed additional support (he is now 30).  So, although you never really know what will happen, it sounds like your boys are doing so well and will be great walkers!
                   
                  Again, such great news!
                  Kristin

                  Rosemary and Len Spampinato <spampinator@ ccbh.com> wrote:
                  Yes, our sons Roman and Dante are both cruising. Roman has taken 5 or
                  six steps on his own. Dante has been more cautious and is still holding
                  on to everything.

                  Are there other boys with MTM who've walked? Our guys were six weeks
                  early and it doesn't seem that they are that far behind.

                  We didn't think they were going to live let alone walk when they were
                  born. Now, they are all over the place in their little cars and
                  walker. Is this just temporary? Is this ability going to go away?
                  I should be so happy but, I'm still so scared even if they start to
                  walk later they may not be able. Is their walking this early a
                  prediction they will be able to walk as an adult?

                  Any comment would help.

                  Thank you.



                  Don't pick lemons.
                  See all the new 2007 cars at Yahoo! Autos.

                • Spampinato, Rosemary
                  Oh my gosh Wendy. I can feel the overwhelming feelings lifting. ... From: Myotubular_Myopathy@yahoogroups.com [mailto:Myotubular_Myopathy@yahoogroups.com]On
                  Message 8 of 13 , Mar 19, 2007
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                    Oh my gosh Wendy. I can feel the overwhelming feelings lifting.
                     
                    -----Original Message-----
                    From: Myotubular_Myopathy@yahoogroups.com [mailto:Myotubular_Myopathy@yahoogroups.com]On Behalf Of Wendy
                    Sent: Friday, March 16, 2007 4:31 PM
                    To: Myotubular_Myopathy@yahoogroups.com
                    Subject: RE: [Myotubular_Myopathy] Our Identical Twins with XLMTM are starting to walk at 19 months.

                    Absolutely, he still does. I think secondary (mainstream) schooling will be demanding which is why we got the scooter – so he can scoot to lessons then get off and walk in and still be there at the same time as his friends.  But a primary he’s always been without wheelchair – usually, we push it around after him on school trips too!!  It’s a good bag-carrier if nothing else!

                    -----Original Message-----
                    From: Myotubular_Myopathy @yahoogroups. com [mailto:Myotubular_ Myopathy@ yahoogroups. com] On Behalf Of Spampinato, Rosemary
                    Sent: 16 March 2007 20:00
                    To: Myotubular_Myopathy @yahoogroups. com
                    Subject: RE: [Myotubular_ Myopathy] Our Identical Twins with XLMTM are starting to walk at 19 months.

                    Well skipping the line is a silver lining. What a funny predicament. 

                    Is he able to go for a full day of school without the wheelchair?

                    -----Original Message-----
                    From: Myotubular_Myopathy @yahoogroups. com [mailto:Myotubular_ Myopathy@ yahoogroups. com]On Behalf Of Wendy
                    Sent: Friday, March 16, 2007 3:03 PM
                    To: Myotubular_Myopathy @yahoogroups. com
                    Subject: RE: [Myotubular_ Myopathy] Our Identical Twins with XLMTM are starting to walk at 19 months.

                    Definitely, we don’t leave home without it!  In fact we are faced with a new dilemma – we need a bigger car because we’d like to take the wheelchair, electric scooter and  “hippocampe” (Hippocampe is a brilliant contraption designed in france – accommodating  a child* to adult.  It goes straight into the sea or swimming pool and floats.   You can even get skis for it!!)!  I can highly recommend Paris for disability access if you ever get the urge to take your boys – its wonderful, beautiful city and people are so helpful towards anyone with a disability. By taking the wheelchair we could walk to all the museums and places of interest and then Zak would get out and walk!  In fact, we felt huge frauds because having been ushered by the stewards and skipping about a 3 hour queue to go up the Eiffel tower Zak just got out of his wheelchair in the lift and asked to walk up the steps to the next deck!! How embarrassing!  I really wish I could say the same for London , although don’t let it put you off as things are improving dramatically especially with the new DDA laws……..we notice a difference every time we go in.  

                    *NB: children do need good lumbar control to be able to sit comfortably in it.

                    -----Original Message-----
                    From: Myotubular_Myopathy @yahoogroups. com [mailto:Myotubular_ Myopathy@ yahoogroups. com] On Behalf Of Spampinato, Rosemary
                    Sent: 16 March 2007 18:23
                    To: Myotubular_Myopathy @yahoogroups. com
                    Subject: RE: [Myotubular_ Myopathy] Our Identical Twins with XLMTM are starting to walk at 19 months.

                    Thank you Wendy.

                    I don't think I have to explain to you how that makes me feel. I feel lucky and blessed, still a little confused, but ultimately thankful.

                    I think you have Zak's pictures posted. When your family was in Paris. Beautiful and inspirational. I imagine you get the wheel chair for long distances.

                    -----Original Message-----
                    From: Myotubular_Myopathy @yahoogroups. com [mailto:Myotubular_ Myopathy@ yahoogroups. com]On Behalf Of Wendy
                    Sent: Friday, March 16, 2007 2:02 PM
                    To: Myotubular_Myopathy @yahoogroups. com
                    Subject: RE: [Myotubular_ Myopathy] Our Identical Twins with XLMTM are starting to walk at 19 months.

                    Hi

                    I can’t see any reason why they would lose the ability to walk. The only time that Zak lost that ability was when he was 3 years old and  had chicken pox, lung collapse and pneumonia and was off his feet for about a month altogether, and had an IV canula in his foot (as that was the only decent vain they could find).  In retrospect, we should have encouraged him to stand in a standing frame to keep the ability/muscles working.  However, even after losing strength in his trunk and leg muscles for a while, he did regain the ability to walk again after a few months.  He is still a very proficient walker (age 11) although he doesn’t like to walk as far (unless he has a balloon or soft ball to kick along in which case he goes on and on and on for ages…..)  As a rough idea – he would walk about 2 / 3 miles sometimes 3 times a week at the age of 5!  The only reason that he wouldn’t manage that distance now – is solely due to the demands of being full time in school having a bigger weight to carry around and having a busy life!

                    Take care, Wendy

                    -----Original Message-----
                    From: Myotubular_Myopathy @yahoogroups. com [mailto:Myotubular_ Myopathy@ yahoogroups. com] On Behalf Of Rosemary and Len Spampinato
                    Sent: 16 March 2007 17:24
                    To: Myotubular_Myopathy @yahoogroups. com
                    Subject: [Myotubular_ Myopathy] Our Identical Twins with XLMTM are starting to walk at 19 months.

                    Yes, our sons Roman and Dante are both cruising. Roman has taken 5 or
                    six steps on his own. Dante has been more cautious and is still holding
                    on to everything.

                    Are there other boys with MTM who've walked? Our guys were six weeks
                    early and it doesn't seem that they are that far behind.

                    We didn't think they were going to live let alone walk when they were
                    born. Now, they are all over the place in their little cars and
                    walker. Is this just temporary? Is this ability going to go away?
                    I should be so happy but, I'm still so scared even if they start to
                    walk later they may not be able. Is their walking this early a
                    prediction they will be able to walk as an adult?

                    Any comment would help.

                    Thank you.

                  • staceynault
                    Hi there, I am excited to read of children walking, my question is how many times if ever has your child been ventilated during their medical history. My 9
                    Message 9 of 13 , Mar 26, 2007
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                      Hi there, I am excited to read of children walking, my question is
                      how many times if ever has your child been ventilated during their
                      medical history. My 9 month old is ventilated now with knenmonia, and
                      I am wondering about other parents and their experiences.
                      Thanks

                      Stacey

                      -- In Myotubular_Myopathy@yahoogroups.com, "Wendy" <wendyhughes@...>
                      wrote:
                      >
                      > Absolutely, he still does. I think secondary (mainstream) schooling
                      will
                      > be demanding which is why we got the scooter - so he can scoot to
                      > lessons then get off and walk in and still be there at the same
                      time as
                      > his friends. But a primary he's always been without wheelchair -
                      > usually, we push it around after him on school trips too!! It's a
                      good
                      > bag-carrier if nothing else!
                      >
                      >
                      > -----Original Message-----
                      > From: Myotubular_Myopathy@yahoogroups.com
                      > [mailto:Myotubular_Myopathy@yahoogroups.com] On Behalf Of
                      Spampinato,
                      > Rosemary
                      > Sent: 16 March 2007 20:00
                      > To: Myotubular_Myopathy@yahoogroups.com
                      > Subject: RE: [Myotubular_Myopathy] Our Identical Twins with XLMTM
                      are
                      > starting to walk at 19 months.
                      >
                      > Well skipping the line is a silver lining. What a funny
                      predicament.
                      > Is he able to go for a full day of school without the wheelchair?
                      > -----Original Message-----
                      > From: Myotubular_Myopathy@yahoogroups.com
                      > [mailto:Myotubular_Myopathy@yahoogroups.com]On Behalf Of Wendy
                      > Sent: Friday, March 16, 2007 3:03 PM
                      > To: Myotubular_Myopathy@yahoogroups.com
                      > Subject: RE: [Myotubular_Myopathy] Our Identical Twins with XLMTM
                      are
                      > starting to walk at 19 months.
                      > Definitely, we don't leave home without it! In fact we are faced
                      with a
                      > new dilemma - we need a bigger car because we'd like to take the
                      > wheelchair, electric scooter and "hippocampe" (Hippocampe is a
                      > brilliant contraption designed in france - accommodating a child*
                      to
                      > adult. It goes straight into the sea or swimming pool and
                      floats. You
                      > can even get skis for it!!)! I can highly recommend Paris for
                      > disability access if you ever get the urge to take your boys - its
                      > wonderful, beautiful city and people are so helpful towards anyone
                      with
                      > a disability. By taking the wheelchair we could walk to all the
                      museums
                      > and places of interest and then Zak would get out and walk! In
                      fact, we
                      > felt huge frauds because having been ushered by the stewards and
                      > skipping about a 3 hour queue to go up the Eiffel tower Zak just
                      got out
                      > of his wheelchair in the lift and asked to walk up the steps to the
                      next
                      > deck!! How embarrassing! I really wish I could say the same for
                      London,
                      > although don't let it put you off as things are improving
                      dramatically
                      > especially with the new DDA laws....we notice a difference every
                      time we
                      > go in.
                      > *NB: children do need good lumbar control to be able to sit
                      comfortably
                      > in it.
                      > -----Original Message-----
                      > From: Myotubular_Myopathy@yahoogroups.com
                      > [mailto:Myotubular_Myopathy@yahoogroups.com] On Behalf Of
                      Spampinato,
                      > Rosemary
                      > Sent: 16 March 2007 18:23
                      > To: Myotubular_Myopathy@yahoogroups.com
                      > Subject: RE: [Myotubular_Myopathy] Our Identical Twins with XLMTM
                      are
                      > starting to walk at 19 months.
                      > Thank you Wendy.
                      > I don't think I have to explain to you how that makes me feel. I
                      feel
                      > lucky and blessed, still a little confused, but ultimately thankful.
                      > I think you have Zak's pictures posted. When your family was in
                      Paris.
                      > Beautiful and inspirational. I imagine you get the wheel chair for
                      long
                      > distances.
                      > -----Original Message-----
                      > From: Myotubular_Myopathy@yahoogroups.com
                      > [mailto:Myotubular_Myopathy@yahoogroups.com]On Behalf Of Wendy
                      > Sent: Friday, March 16, 2007 2:02 PM
                      > To: Myotubular_Myopathy@yahoogroups.com
                      > Subject: RE: [Myotubular_Myopathy] Our Identical Twins with XLMTM
                      are
                      > starting to walk at 19 months.
                      > Hi
                      > I can't see any reason why they would lose the ability to walk. The
                      only
                      > time that Zak lost that ability was when he was 3 years old and had
                      > chicken pox, lung collapse and pneumonia and was off his feet for
                      about
                      > a month altogether, and had an IV canula in his foot (as that was
                      the
                      > only decent vain they could find). In retrospect, we should have
                      > encouraged him to stand in a standing frame to keep the
                      ability/muscles
                      > working. However, even after losing strength in his trunk and leg
                      > muscles for a while, he did regain the ability to walk again after
                      a few
                      > months. He is still a very proficient walker (age 11) although he
                      > doesn't like to walk as far (unless he has a balloon or soft ball to
                      > kick along in which case he goes on and on and on for ages...) As a
                      > rough idea - he would walk about 2 / 3 miles sometimes 3 times a
                      week at
                      > the age of 5! The only reason that he wouldn't manage that
                      distance now
                      > - is solely due to the demands of being full time in school having a
                      > bigger weight to carry around and having a busy life!
                      > Take care, Wendy
                      > -----Original Message-----
                      > From: Myotubular_Myopathy@yahoogroups.com
                      > [mailto:Myotubular_Myopathy@yahoogroups.com] On Behalf Of Rosemary
                      and
                      > Len Spampinato
                      > Sent: 16 March 2007 17:24
                      > To: Myotubular_Myopathy@yahoogroups.com
                      > Subject: [Myotubular_Myopathy] Our Identical Twins with XLMTM are
                      > starting to walk at 19 months.
                      > Yes, our sons Roman and Dante are both cruising. Roman has taken 5
                      or
                      > six steps on his own. Dante has been more cautious and is still
                      holding
                      > on to everything.
                      >
                      > Are there other boys with MTM who've walked? Our guys were six
                      weeks
                      > early and it doesn't seem that they are that far behind.
                      >
                      > We didn't think they were going to live let alone walk when they
                      were
                      > born. Now, they are all over the place in their little cars and
                      > walker. Is this just temporary? Is this ability going to go away?
                      > I should be so happy but, I'm still so scared even if they start to
                      > walk later they may not be able. Is their walking this early a
                      > prediction they will be able to walk as an adult?
                      >
                      > Any comment would help.
                      >
                      > Thank you.
                      >
                    • Spampinato, Rosemary
                      The twins were ventilated for their first two months. They were titrated down from ventilator very slowly to cycled c pap, c-pap and then nasal canula. They
                      Message 10 of 13 , Mar 27, 2007
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                        The twins were ventilated for their first two months. They were titrated down from ventilator very slowly to cycled c pap, c-pap and then nasal canula. They never received bi pap although we got close about a month ago because we suspected pneumonia.
                         
                        Thhey haven't been on a ventilaor since they were about two months.
                        Now, our pulmonologist in Pittsburgh and his department try to avoid putting kids with myopathies on ventilators because of the increased risk of infection. I don't believe they have treated anyone else with MTM except my sons but they have seen so of the other myopathies before. Of course, if they had to ventilate the boys they would but they would try to avoid it.
                         
                        I'm curious what people think about this philosophy.
                         
                        -----Original Message-----
                        From: Myotubular_Myopathy@yahoogroups.com [mailto:Myotubular_Myopathy@yahoogroups.com]On Behalf Of staceynault
                        Sent: Tuesday, March 27, 2007 1:59 AM
                        To: Myotubular_Myopathy@yahoogroups.com
                        Subject: [Myotubular_Myopathy] Re: Our Identical Twins with XLMTM are starting to walk at 19 months.

                        Hi there, I am excited to read of children walking, my question is
                        how many times if ever has your child been ventilated during their
                        medical history. My 9 month old is ventilated now with knenmonia, and
                        I am wondering about other parents and their experiences.
                        Thanks

                        Stacey

                        -- In Myotubular_Myopathy @yahoogroups. com, "Wendy" <wendyhughes@ ...>
                        wrote:
                        >
                        > Absolutely, he still does. I think secondary (mainstream) schooling
                        will
                        > be demanding which is why we got the scooter - so he can scoot to
                        > lessons then get off and walk in and still be there at the same
                        time as
                        > his friends. But a primary he's always been without wheelchair -
                        > usually, we push it around after him on school trips too!! It's a
                        good
                        > bag-carrier if nothing else!
                        >
                        >
                        > -----Original Message-----
                        > From: Myotubular_Myopathy @yahoogroups. com
                        > [mailto:Myotubular_Myopathy @yahoogroups. com] On Behalf Of
                        Spampinato,
                        > Rosemary
                        > Sent: 16 March 2007 20:00
                        > To: Myotubular_Myopathy @yahoogroups. com
                        > Subject: RE: [Myotubular_ Myopathy] Our Identical Twins with XLMTM
                        are
                        > starting to walk at 19 months.
                        >
                        > Well skipping the line is a silver lining. What a funny
                        predicament.
                        > Is he able to go for a full day of school without the wheelchair?
                        > -----Original Message-----
                        > From: Myotubular_Myopathy @yahoogroups. com
                        > [mailto:Myotubular_Myopathy @yahoogroups. com]On Behalf Of Wendy
                        > Sent: Friday, March 16, 2007 3:03 PM
                        > To: Myotubular_Myopathy @yahoogroups. com
                        > Subject: RE: [Myotubular_ Myopathy] Our Identical Twins with XLMTM
                        are
                        > starting to walk at 19 months.
                        > Definitely, we don't leave home without it! In fact we are faced
                        with a
                        > new dilemma - we need a bigger car because we'd like to take the
                        > wheelchair, electric scooter and "hippocampe" (Hippocampe is a
                        > brilliant contraption designed in france - accommodating a child*
                        to
                        > adult. It goes straight into the sea or swimming pool and
                        floats. You
                        > can even get skis for it!!)! I can highly recommend Paris for
                        > disability access if you ever get the urge to take your boys - its
                        > wonderful, beautiful city and people are so helpful towards anyone
                        with
                        > a disability. By taking the wheelchair we could walk to all the
                        museums
                        > and places of interest and then Zak would get out and walk! In
                        fact, we
                        > felt huge frauds because having been ushered by the stewards and
                        > skipping about a 3 hour queue to go up the Eiffel tower Zak just
                        got out
                        > of his wheelchair in the lift and asked to walk up the steps to the
                        next
                        > deck!! How embarrassing! I really wish I could say the same for
                        London,
                        > although don't let it put you off as things are improving
                        dramatically
                        > especially with the new DDA laws....we notice a difference every
                        time we
                        > go in.
                        > *NB: children do need good lumbar control to be able to sit
                        comfortably
                        > in it.
                        > -----Original Message-----
                        > From: Myotubular_Myopathy @yahoogroups. com
                        > [mailto:Myotubular_Myopathy @yahoogroups. com] On Behalf Of
                        Spampinato,
                        > Rosemary
                        > Sent: 16 March 2007 18:23
                        > To: Myotubular_Myopathy @yahoogroups. com
                        > Subject: RE: [Myotubular_ Myopathy] Our Identical Twins with XLMTM
                        are
                        > starting to walk at 19 months.
                        > Thank you Wendy.
                        > I don't think I have to explain to you how that makes me feel. I
                        feel
                        > lucky and blessed, still a little confused, but ultimately thankful.
                        > I think you have Zak's pictures posted. When your family was in
                        Paris.
                        > Beautiful and inspirational. I imagine you get the wheel chair for
                        long
                        > distances.
                        > -----Original Message-----
                        > From: Myotubular_Myopathy @yahoogroups. com
                        > [mailto:Myotubular_Myopathy @yahoogroups. com]On Behalf Of Wendy
                        > Sent: Friday, March 16, 2007 2:02 PM
                        > To: Myotubular_Myopathy @yahoogroups. com
                        > Subject: RE: [Myotubular_ Myopathy] Our Identical Twins with XLMTM
                        are
                        > starting to walk at 19 months.
                        > Hi
                        > I can't see any reason why they would lose the ability to walk. The
                        only
                        > time that Zak lost that ability was when he was 3 years old and had
                        > chicken pox, lung collapse and pneumonia and was off his feet for
                        about
                        > a month altogether, and had an IV canula in his foot (as that was
                        the
                        > only decent vain they could find). In retrospect, we should have
                        > encouraged him to stand in a standing frame to keep the
                        ability/muscles
                        > working. However, even after losing strength in his trunk and leg
                        > muscles for a while, he did regain the ability to walk again after
                        a few
                        > months. He is still a very proficient walker (age 11) although he
                        > doesn't like to walk as far (unless he has a balloon or soft ball to
                        > kick along in which case he goes on and on and on for ages...) As a
                        > rough idea - he would walk about 2 / 3 miles sometimes 3 times a
                        week at
                        > the age of 5! The only reason that he wouldn't manage that
                        distance now
                        > - is solely due to the demands of being full time in school having a
                        > bigger weight to carry around and having a busy life!
                        > Take care, Wendy
                        > -----Original Message-----
                        > From: Myotubular_Myopathy @yahoogroups. com
                        > [mailto:Myotubular_Myopathy @yahoogroups. com] On Behalf Of Rosemary
                        and
                        > Len Spampinato
                        > Sent: 16 March 2007 17:24
                        > To: Myotubular_Myopathy @yahoogroups. com
                        > Subject: [Myotubular_ Myopathy] Our Identical Twins with XLMTM are
                        > starting to walk at 19 months.
                        > Yes, our sons Roman and Dante are both cruising. Roman has taken 5
                        or
                        > six steps on his own. Dante has been more cautious and is still
                        holding
                        > on to everything.
                        >
                        > Are there other boys with MTM who've walked? Our guys were six
                        weeks
                        > early and it doesn't seem that they are that far behind.
                        >
                        > We didn't think they were going to live let alone walk when they
                        were
                        > born. Now, they are all over the place in their little cars and
                        > walker. Is this just temporary? Is this ability going to go away?
                        > I should be so happy but, I'm still so scared even if they start to
                        > walk later they may not be able. Is their walking this early a
                        > prediction they will be able to walk as an adult?
                        >
                        > Any comment would help.
                        >
                        > Thank you.
                        >

                      • patsarah2006
                        Rosemary, Regarding your request for feedback on the Pittsburgh pulmonologist s approach to avoid ventilators in children with myopathies, I m not sure if I
                        Message 11 of 13 , Mar 28, 2007
                        • 0 Attachment
                          Rosemary, Regarding your request for feedback on the Pittsburgh
                          pulmonologist's approach to avoid ventilators in children with
                          myopathies, I'm not sure if I understood the point about the risk of
                          infections. I am admittedly no expert on this, but I don't think that
                          the ventilator itself increases the risk of infections. There are
                          some experts who believe that the tracheostomy may increase the
                          secretions and that putting the tube down the trach for suctioning
                          can sometimes push/lodge those secretions deeper down, and that all
                          of this plugging of secretions can increase the risk of infections.
                          Some children apparently require the trach and get fantastic, life-
                          saving benefit from it. But, as Wendy in the UK has already
                          accurately pointed out, other children are able to get by with non-
                          invasive ventilation ("non-invasive" means that the child still uses
                          a ventilator, but does not have a trach. Instead, the ventilator
                          attaches to the child through a nose mask or a mouthpiece, thus
                          avoiding the tracheostomy in some patients). Thus, with noninvasive
                          ventilation some kids can avoid the potential downsides of the trach
                          (secretions, decreased ability to localize/talk) but still get the
                          benefit of the ventilator (if they need that, which fortunately the
                          twins apparently don't). Each case is of course an individual
                          decision between the family and the treating doctors.

                          For our son Adam, we are fortunate that his myopathy is mild enough
                          that he has never required a ventilator or tracheostomy. Still, his
                          myopathy causes weakness in the muscles that would normally cough to
                          expel secretions. His doctors advocate the clearing the secretions is
                          the most important thing for preventing infections. (And
                          teaching/using diligent handwashing is important for the child and
                          all caregivers, friends, siblings, etc..). Adam's protocol is that we
                          monitor his oxygen saturation with a pulse oximeter. When his oxygen
                          saturation goes to less than 95%, we use a CoughAssist machine to
                          help clear the secretions and get the saturation back up above 95%.
                          Adam's doctor treats lots of patients with myopathies, including some
                          with XLMTM, and uses a similar approach of trying to avoid infections
                          by monitoring oxygen saturation and clearing the secretions (whether
                          the patient is using a ventilator or not).

                          You are one state away (I'm in New Jersey), so hopefully one day our
                          families/kids will meet. Until then, all the best.

                          -Pat
                        • patsarah2006
                          Rosemary, First of all, I am thrilled to hear that your twins are starting to walk. That s great! I know that my wife Sarah and others in the online community
                          Message 12 of 13 , Mar 28, 2007
                          • 0 Attachment
                            Rosemary, First of all, I am thrilled to hear that your twins are
                            starting to walk. That's great! I know that my wife Sarah and others
                            in the online community here have already extended their
                            congratulations, but I've gotten behind on this Yahoo group so I'm
                            catching up now. We all share in joy of the successes that these
                            children achieved. Myotubular/Centronuclear Myopathies (MTM/CNM) are
                            serious conditions, but many of these children do far better than
                            doctors might tell us based on the older medical literature. The fact
                            that your twins have XLMTM (considered to be the most severe form of
                            CNM) but are not requiring a ventilator and are starting to walk is a
                            terrific example of this. (Also, the medical literature last year,
                            2006, included a 68 year old grandfather who was diagnosed with
                            XLMTM.) Meanwhile, let me say once again how thrilled I am that the
                            twins are doing so well. I will keep the twins, and all of these
                            children, in my daily thoughts and prayers, wishing them all great
                            things.
                            -Pat (in New Jersey)


                            --- In Myotubular_Myopathy@yahoogroups.com, "Rosemary and Len
                            Spampinato" <spampinator@...> wrote:
                            >
                            > Yes, our sons Roman and Dante are both cruising. Roman has taken 5
                            or
                            > six steps on his own. Dante has been more cautious and is still
                            holding
                            > on to everything.
                            >
                            > Are there other boys with MTM who've walked? Our guys were six
                            weeks
                            > early and it doesn't seem that they are that far behind.
                            >
                            > We didn't think they were going to live let alone walk when they
                            were
                            > born. Now, they are all over the place in their little cars and
                            > walker. Is this just temporary? Is this ability going to go away?
                            > I should be so happy but, I'm still so scared even if they start to
                            > walk later they may not be able. Is their walking this early a
                            > prediction they will be able to walk as an adult?
                            >
                            > Any comment would help.
                            >
                            > Thank you.
                            >
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