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RE: [Myotubular_Myopathy] Zac's heart irregularity

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  • Wendy
    Hi Simone All this sounds very familiar about the heart and we have just experienced exactly the same with our Zak - do not panic unneccessarily!! They picked
    Message 1 of 12 , Aug 1, 2006
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      Hi Simone

      All this sounds very familiar about the heart and we have just experienced exactly the same with our Zak – do not panic unneccessarily!! They picked up abnormal heart rhythms on ECG just after Christmas and we were so

      (Message over 64 KB, truncated)

    • DARLENE MILLER
      Hi Simone, We take Kyle every two years to the Cardilogist, for an echo-gram and EKG. We just got back from there today. Everything showed his heart was fine.
      Message 2 of 12 , Aug 1, 2006
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        Hi Simone,
         
        We take Kyle every two years to the Cardilogist, for an echo-gram and EKG.
        We just got back from there today.  Everything showed his heart was fine.
        Now, his brother, Connor has had problems with his heart, but they still don't
        know why or what the problem is.  His just stops for no known reason.  This
        has happened 4 times now. 
         
        Kyle also uses The Vest which is similar to the cough assist.  He uses this 2x's
        a day for 20 minutes each.  It does help him greatly.  Especially, since it has
        been so hot here.  I've noticed a difference in his breathing when we use it
        before going outside(which lately has only been for appointments). 
         
        Both boys have very high palates.  Kyle also has a lot of teeth and a small
        mouth.  We were told by his dentist to wait on any teeth pulling or surgery
        on his mouth until he started getting his adult teeth unless he is having
        pain or some type of complications to his mouth.  This will give him time for
        his mouth to grow and hopefully not need as much work done.  If we took
        out any teeth now (he is almost 5 years old) it may cause more complications
        as he starts to have his adult teeth come in.
         
        Hope this helps.
         
        Take care,
        Darlene
         
        ----- Original Message -----
        From: SIMONE
        Sent: Tuesday, August 01, 2006 12:24 AM
        Subject: [Myotubular_Myopathy] Zac's heart irregularity

        Hi everyone. Well we went to meet a neurologist yesterday and he was
        great. He has started a neuromuscular clinic here in brisbane the
        ifrst of its kind. He is very knowledgeable and very personable.
        Zac really liked him.
        He did suggest Zac have a cardio graph because he said his heartbeat
        was irregular. So we are waiting on an appointment with the
        cardiologist. We thought the heart was unaffected with MTM but he
        said that due to zacs weak muscles he can have irregularities. Does
        anyone elses boys have heart problems? We are a little concerned.

        The neurologist also suggested that we trial zac on a cough assist
        machine to help with his weak cough and clearing secretions. Does
        anyone else use these and are they affective? Zacs respiratory
        specialist is totally against them so we have never used them. I
        wish we could have at least let Trent try it as perhaps he may still
        be here with this assistance.

        We have some UK specialist in respiratory physio coming out to
        Brisbane to talk about cough assists etc soon so hopefully we can
        get an invite to hear what he has to say.

        Finally, I was wondering if anyone elses boys have had teeth
        problems? Zac has had 2 lots of surgery for his teeth and will need
        one later due to his high palate. His other surgery was due to his
        teeth being talky and decayed when they first came down so they were
        removed and crowns put in.
        Hope all is well with everyone
        Cheers
        SImone

      • Shannon
        Javad has had his heart checked in the past and everything is fine. We are also getting it checked again (I think we will do this one time per year as well!)
        Message 3 of 12 , Aug 2, 2006
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          Javad has had his heart checked in the past and everything is fine. We
          are also getting it checked again (I think we will do this one time
          per year as well!) Javad, like Kyle, uses the Vest twice a day which
          is very beneficial. He does not like using the cough assist, so we
          went to the vest instead. He watches TV during treatments or whatever
          else. It's not a bother!

          I hope all goes well!

          Shannon
        • Wendy
          Hi Shannon, Would you mind letting me know who manufacturers/produces the Vest? I was trying to see whether its available in the UK (as I d mentioned it to
          Message 4 of 12 , Aug 3, 2006
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            Hi Shannon,

             

          • Scott & Betsy Grant
            Dear everyone, dental problems, liver problems, heart problems....Hi, my name is Betsy Grant, my 9-year-old son Kyle has MTM. I just joined this group, I
            Message 5 of 12 , Aug 6, 2006
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              Dear everyone,
              dental problems, liver problems, heart problems....Hi, my name is Betsy Grant, my 9-year-old son Kyle has MTM. I just joined this group, I wasn't aware of it before (although I wasn't really looking for a group) and am very happy to have found it!
              We live in the Northeastern US, 200 miles north of Boston, in case anybody's curious.
              You mentioned a couple of things that caught my attention. One is the heart irregularity, I hadn't heard of any heart problems before with these kids. I'd be interested to know what you find out after the cardio graph, I wonder if they'll do an echocardiogram as well. (which is an ultrasound of the heart)
              My son was born with an extremely high palate which has come down a bit, his teeth don't align correctly for chewing, at this point either, which of course it may not ever be an issue. One orthodontist did say something about his tooth enamel looking damaged, but no one else has ever said that, and he's been to a few different dentists. No one has talked to me about him needing any major surgery unless we wanted to prepare his mouth for chewing. Perhaps someone has another comment about this.
              Our son has had liver problems, I wonder if anyone else here has had experience with this. Shortly after he was born he developed jaundice, and had elevated liver enzymes for awhile. The doc did an ultrasound and wanted to do a biopsy but we flatly refused to put him through that! There was a high probability that he wouldn't find anything, or that if he did there wasn't anything we could do about it, and it was a very risky procedure. I was actually disgusted with the doc for wanted to do it, he knew others had had bleeding from this. Fortunately since then he has not had any jaundice, but continues to have slightly elev. enzymes, which apparently causes a lot of skin irritation and itching.
              I'm curious about the cough machines, I have no experience with them, and they do seem controversial. Perhaps there's a danger of damaging the lungs.What is this "vest" people are referring to?? Can anyone refer me to a website that might have more info on this device?
              What are you all using for respiratory support for your sons? We are using an LTV 950.
              Lots of questions, I realize.
              Thanks everyone!
              Betsy
               


               
              On 8/1/06, SIMONE <zacantsim70@...> wrote:

              Hi everyone. Well we went to meet a neurologist yesterday and he was
              great. He has started a neuromuscular clinic here in brisbane the
              ifrst of its kind. He is very knowledgeable and very personable.
              Zac really liked him.
              He did suggest Zac have a cardio graph because he said his heartbeat
              was irregular. So we are waiting on an appointment with the
              cardiologist. We thought the heart was unaffected with MTM but he
              said that due to zacs weak muscles he can have irregularities. Does
              anyone elses boys have heart problems? We are a little concerned.

              The neurologist also suggested that we trial zac on a cough assist
              machine to help with his weak cough and clearing secretions. Does
              anyone else use these and are they affective? Zacs respiratory
              specialist is totally against them so we have never used them. I
              wish we could have at least let Trent try it as perhaps he may still
              be here with this assistance.

              We have some UK specialist in respiratory physio coming out to
              Brisbane to talk about cough assists etc soon so hopefully we can
              get an invite to hear what he has to say.

              Finally, I was wondering if anyone elses boys have had teeth
              problems? Zac has had 2 lots of surgery for his teeth and will need
              one later due to his high palate. His other surgery was due to his
              teeth being talky and decayed when they first came down so they were
              removed and crowns put in.
              Hope all is well with everyone
              Cheers
              SImone


            • TONI ABRAM
              Hello to the new members here - can t believe there are 3 of you all at once! My name is Toni, my father and I have the Dominant Centronuclear Myopathy and
              Message 6 of 12 , Aug 15, 2006
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              • Wendy
                Hello Betsy! Welcome to the group - we re pleased you ve found it too. I have 10 year old Zak with x-linked MTM and we live in the UK. With regard to heart
                Message 7 of 12 , Aug 16, 2006
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                  Hello Betsy!

                  Welcome to the group – we’re pleased you’ve found it too.

                  I have 10 year old Zak with x-linked MTM and we live in the UK

                • jonnynomates1
                  Hello, and welcome to the group, My name is Jon, on 26th aug 2005 we had a baby boy called Archie, at birth he was having respiratory difficulty and rushed to
                  Message 8 of 12 , Aug 16, 2006
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                    Hello, and welcome to the group, My name is Jon, on 26th aug 2005
                    we had a baby boy called Archie, at birth he was having respiratory
                    difficulty and rushed to NICU, where he was intubated, he gradually
                    improved and only needed CPAP after 1 month, he made steady progress
                    but was extremely fragile and after 5 months in Intensive care he
                    slipped away from us.

                    You mentioned about Heart problems and although the heart is an
                    involuntary muscle and is not affected directly, my little Archie
                    suffered a Cardiac Arrest and after 45 mins of Adrenaline shots and
                    Cardiac massage he died.

                    Archie is not the only child to have passed away from Cardiac failure
                    and I know of 3 other cases, all I can say is that perhaps with all
                    the extra effort (particularly in more severe cases and babies)
                    placed on the heart it is no surprise that that some of these
                    children have heart difficulties, I do hope I am not scaring anyone
                    as it seems most mtm children dont suffer cardiac failure, just that
                    there may be a link in some cases caused by the extra work.

                    regards

                    Jon

                    --- In Myotubular_Myopathy@yahoogroups.com, "Scott & Betsy Grant"
                    <scottnbets@...> wrote:
                    >
                    > Dear everyone,
                    > dental problems, liver problems, heart problems....Hi, my name is
                    Betsy
                    > Grant, my 9-year-old son Kyle has MTM. I just joined this group, I
                    wasn't
                    > aware of it before (although I wasn't really looking for a group)
                    and am
                    > very happy to have found it!
                    > We live in the Northeastern US, 200 miles north of Boston, in case
                    anybody's
                    > curious.
                    > You mentioned a couple of things that caught my attention. One is
                    the heart
                    > irregularity, I hadn't heard of any heart problems before with
                    these kids.
                    > I'd be interested to know what you find out after the cardio
                    graph, I wonder
                    > if they'll do an echocardiogram as well. (which is an ultrasound
                    of the
                    > heart)
                    > My son was born with an extremely high palate which has come down
                    a bit, his
                    > teeth don't align correctly for chewing, at this point either,
                    which of
                    > course it may not ever be an issue. One orthodontist did say
                    something about
                    > his tooth enamel looking damaged, but no one else has ever said
                    that, and
                    > he's been to a few different dentists. No one has talked to me
                    about him
                    > needing any major surgery unless we wanted to prepare his mouth
                    for chewing.
                    > Perhaps someone has another comment about this.
                    > Our son has had liver problems, I wonder if anyone else here has
                    had
                    > experience with this. Shortly after he was born he developed
                    jaundice, and
                    > had elevated liver enzymes for awhile. The doc did an ultrasound
                    and wanted
                    > to do a biopsy but we flatly refused to put him through that!
                    There was a
                    > high probability that he wouldn't find anything, or that if he did
                    there
                    > wasn't anything we could do about it, and it was a very risky
                    procedure. I
                    > was actually disgusted with the doc for wanted to do it, he knew
                    others had
                    > had bleeding from this. Fortunately since then he has not had any
                    jaundice,
                    > but continues to have slightly elev. enzymes, which apparently
                    causes a lot
                    > of skin irritation and itching.
                    > I'm curious about the cough machines, I have no experience with
                    them, and
                    > they do seem controversial. Perhaps there's a danger of damaging
                    the
                    > lungs.What is this "vest" people are referring to?? Can anyone
                    refer me to a
                    > website that might have more info on this device?
                    > What are you all using for respiratory support for your sons? We
                    are using
                    > an LTV 950.
                    > Lots of questions, I realize.
                    > Thanks everyone!
                    > Betsy
                    >
                    >
                    >
                    >
                    > On 8/1/06, SIMONE <zacantsim70@...> wrote:
                    > >
                    > > Hi everyone. Well we went to meet a neurologist yesterday and
                    he was
                    > > great. He has started a neuromuscular clinic here in brisbane the
                    > > ifrst of its kind. He is very knowledgeable and very personable.
                    > > Zac really liked him.
                    > > He did suggest Zac have a cardio graph because he said his
                    heartbeat
                    > > was irregular. So we are waiting on an appointment with the
                    > > cardiologist. We thought the heart was unaffected with MTM but he
                    > > said that due to zacs weak muscles he can have irregularities.
                    Does
                    > > anyone elses boys have heart problems? We are a little concerned.
                    > >
                    > > The neurologist also suggested that we trial zac on a cough
                    assist
                    > > machine to help with his weak cough and clearing secretions. Does
                    > > anyone else use these and are they affective? Zacs respiratory
                    > > specialist is totally against them so we have never used them. I
                    > > wish we could have at least let Trent try it as perhaps he may
                    still
                    > > be here with this assistance.
                    > >
                    > > We have some UK specialist in respiratory physio coming out to
                    > > Brisbane to talk about cough assists etc soon so hopefully we can
                    > > get an invite to hear what he has to say.
                    > >
                    > > Finally, I was wondering if anyone elses boys have had teeth
                    > > problems? Zac has had 2 lots of surgery for his teeth and will
                    need
                    > > one later due to his high palate. His other surgery was due to
                    his
                    > > teeth being talky and decayed when they first came down so they
                    were
                    > > removed and crowns put in.
                    > > Hope all is well with everyone
                    > > Cheers
                    > > SImone
                    > >
                    > >
                    > >
                    >
                  • SIMONE
                    Hi betsy Thanks for the response. Well we have finally got an appointment for his cardiologist . It is not until mid november. This is the first private
                    Message 9 of 12 , Aug 17, 2006
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                      Hi betsy

                      Thanks for the response. Well we have finally got an appointment for
                      his cardiologist . It is not until mid november. This is the first
                      private appointment. The public clinic was booked until April 07 .
                      But as we wanted answers we will pay $120.00 to see someone soon.

                      In terms of liver problems Zac was jaundice at birth but we haven't
                      really noticed any problems. But he does say his skin feels itchy
                      often so I will talk to our pedeatrician.

                      Our eldest son Trent who passed away was on cpap machine at night.
                      Zac is requiring no assistance at night yet.

                      Best wishes
                      simone
                      --- In Myotubular_Myopathy@yahoogroups.com, "Scott & Betsy Grant"
                      <scottnbets@...> wrote:
                      >
                      > Dear everyone,
                      > dental problems, liver problems, heart problems....Hi, my name is
                      Betsy
                      > Grant, my 9-year-old son Kyle has MTM. I just joined this group, I
                      wasn't
                      > aware of it before (although I wasn't really looking for a group)
                      and am
                      > very happy to have found it!
                      > We live in the Northeastern US, 200 miles north of Boston, in case
                      anybody's
                      > curious.
                      > You mentioned a couple of things that caught my attention. One is
                      the heart
                      > irregularity, I hadn't heard of any heart problems before with
                      these kids.
                      > I'd be interested to know what you find out after the cardio
                      graph, I wonder
                      > if they'll do an echocardiogram as well. (which is an ultrasound
                      of the
                      > heart)
                      > My son was born with an extremely high palate which has come down
                      a bit, his
                      > teeth don't align correctly for chewing, at this point either,
                      which of
                      > course it may not ever be an issue. One orthodontist did say
                      something about
                      > his tooth enamel looking damaged, but no one else has ever said
                      that, and
                      > he's been to a few different dentists. No one has talked to me
                      about him
                      > needing any major surgery unless we wanted to prepare his mouth
                      for chewing.
                      > Perhaps someone has another comment about this.
                      > Our son has had liver problems, I wonder if anyone else here has
                      had
                      > experience with this. Shortly after he was born he developed
                      jaundice, and
                      > had elevated liver enzymes for awhile. The doc did an ultrasound
                      and wanted
                      > to do a biopsy but we flatly refused to put him through that!
                      There was a
                      > high probability that he wouldn't find anything, or that if he did
                      there
                      > wasn't anything we could do about it, and it was a very risky
                      procedure. I
                      > was actually disgusted with the doc for wanted to do it, he knew
                      others had
                      > had bleeding from this. Fortunately since then he has not had any
                      jaundice,
                      > but continues to have slightly elev. enzymes, which apparently
                      causes a lot
                      > of skin irritation and itching.
                      > I'm curious about the cough machines, I have no experience with
                      them, and
                      > they do seem controversial. Perhaps there's a danger of damaging
                      the
                      > lungs.What is this "vest" people are referring to?? Can anyone
                      refer me to a
                      > website that might have more info on this device?
                      > What are you all using for respiratory support for your sons? We
                      are using
                      > an LTV 950.
                      > Lots of questions, I realize.
                      > Thanks everyone!
                      > Betsy
                      >
                      >
                      >
                      >
                      > On 8/1/06, SIMONE <zacantsim70@...> wrote:
                      > >
                      > > Hi everyone. Well we went to meet a neurologist yesterday and
                      he was
                      > > great. He has started a neuromuscular clinic here in brisbane the
                      > > ifrst of its kind. He is very knowledgeable and very personable.
                      > > Zac really liked him.
                      > > He did suggest Zac have a cardio graph because he said his
                      heartbeat
                      > > was irregular. So we are waiting on an appointment with the
                      > > cardiologist. We thought the heart was unaffected with MTM but he
                      > > said that due to zacs weak muscles he can have irregularities.
                      Does
                      > > anyone elses boys have heart problems? We are a little concerned.
                      > >
                      > > The neurologist also suggested that we trial zac on a cough
                      assist
                      > > machine to help with his weak cough and clearing secretions. Does
                      > > anyone else use these and are they affective? Zacs respiratory
                      > > specialist is totally against them so we have never used them. I
                      > > wish we could have at least let Trent try it as perhaps he may
                      still
                      > > be here with this assistance.
                      > >
                      > > We have some UK specialist in respiratory physio coming out to
                      > > Brisbane to talk about cough assists etc soon so hopefully we can
                      > > get an invite to hear what he has to say.
                      > >
                      > > Finally, I was wondering if anyone elses boys have had teeth
                      > > problems? Zac has had 2 lots of surgery for his teeth and will
                      need
                      > > one later due to his high palate. His other surgery was due to
                      his
                      > > teeth being talky and decayed when they first came down so they
                      were
                      > > removed and crowns put in.
                      > > Hope all is well with everyone
                      > > Cheers
                      > > SImone
                      > >
                      > >
                      > >
                      >
                    • Scott & Betsy Grant
                      Thank-you Simone. Kyle is on a medication for his liver called ursodiol. It supposedly helps the gallbladder empty and so in turn helps his liver function
                      Message 10 of 12 , Aug 18, 2006
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                        Thank-you Simone.
                        Kyle is on a medication for his liver called ursodiol. It supposedly helps the gallbladder empty and so in turn helps his liver function better. I think it does help with the itching.
                        It's remarkable to me that Zac doesn't need any nighttime support from a machine, Kyle barely breathes at all in his sleep!
                        16 years ago we had a baby boy, who had another completely different problem at birth which took his life. After we had Kyle, then we learned our first son probably also had MTM, but no one ever told us that they were suspicious of something like that as well.
                        So I know how it feels to have had one and lost.
                        All the best to you.
                        Betsy

                         
                        On 8/17/06, SIMONE <zacantsim70@...> wrote:

                        Hi betsy

                        Thanks for the response. Well we have finally got an appointment for
                        his cardiologist . It is not until mid november. This is the first
                        private appointment. The public clinic was booked until April 07 .
                        But as we wanted answers we will pay $120.00 to see someone soon.

                        In terms of liver problems Zac was jaundice at birth but we haven't
                        really noticed any problems. But he does say his skin feels itchy
                        often so I will talk to our pedeatrician.

                        Our eldest son Trent who passed away was on cpap machine at night.
                        Zac is requiring no assistance at night yet.

                        Best wishes
                        simone


                        --- In Myotubular_Myopathy@yahoogroups.com, "Scott & Betsy Grant"
                        <scottnbets@...> wrote:
                        >
                        > Dear everyone,
                        > dental problems, liver problems, heart problems....Hi, my name is
                        Betsy
                        > Grant, my 9-year-old son Kyle has MTM. I just joined this group, I
                        wasn't
                        > aware of it before (although I wasn't really looking for a group)
                        and am
                        > very happy to have found it!
                        > We live in the Northeastern US, 200 miles north of Boston, in case
                        anybody's
                        > curious.
                        > You mentioned a couple of things that caught my attention. One is
                        the heart
                        > irregularity, I hadn't heard of any heart problems before with
                        these kids.
                        > I'd be interested to know what you find out after the cardio
                        graph, I wonder
                        > if they'll do an echocardiogram as well. (which is an ultrasound
                        of the
                        > heart)
                        > My son was born with an extremely high palate which has come down
                        a bit, his
                        > teeth don't align correctly for chewing, at this point either,
                        which of
                        > course it may not ever be an issue. One orthodontist did say
                        something about
                        > his tooth enamel looking damaged, but no one else has ever said
                        that, and
                        > he's been to a few different dentists. No one has talked to me
                        about him
                        > needing any major surgery unless we wanted to prepare his mouth
                        for chewing.
                        > Perhaps someone has another comment about this.
                        > Our son has had liver problems, I wonder if anyone else here has
                        had
                        > experience with this. Shortly after he was born he developed
                        jaundice, and
                        > had elevated liver enzymes for awhile. The doc did an ultrasound
                        and wanted
                        > to do a biopsy but we flatly refused to put him through that!
                        There was a
                        > high probability that he wouldn't find anything, or that if he did
                        there
                        > wasn't anything we could do about it, and it was a very risky
                        procedure. I
                        > was actually disgusted with the doc for wanted to do it, he knew
                        others had
                        > had bleeding from this. Fortunately since then he has not had any
                        jaundice,
                        > but continues to have slightly elev. enzymes, which apparently
                        causes a lot
                        > of skin irritation and itching.
                        > I'm curious about the cough machines, I have no experience with
                        them, and
                        > they do seem controversial. Perhaps there's a danger of damaging
                        the
                        > lungs.What is this "vest" people are referring to?? Can anyone
                        refer me to a
                        > website that might have more info on this device?
                        > What are you all using for respiratory support for your sons? We
                        are using
                        > an LTV 950.
                        > Lots of questions, I realize.
                        > Thanks everyone!
                        > Betsy
                        >
                        >
                        >
                        >
                        > On 8/1/06, SIMONE <zacantsim70@...> wrote:
                        > >
                        > > Hi everyone. Well we went to meet a neurologist yesterday and
                        he was
                        > > great. He has started a neuromuscular clinic here in brisbane the
                        > > ifrst of its kind. He is very knowledgeable and very personable.
                        > > Zac really liked him.
                        > > He did suggest Zac have a cardio graph because he said his
                        heartbeat
                        > > was irregular. So we are waiting on an appointment with the
                        > > cardiologist. We thought the heart was unaffected with MTM but he
                        > > said that due to zacs weak muscles he can have irregularities.
                        Does
                        > > anyone elses boys have heart problems? We are a little concerned.
                        > >
                        > > The neurologist also suggested that we trial zac on a cough
                        assist
                        > > machine to help with his weak cough and clearing secretions. Does
                        > > anyone else use these and are they affective? Zacs respiratory
                        > > specialist is totally against them so we have never used them. I
                        > > wish we could have at least let Trent try it as perhaps he may
                        still
                        > > be here with this assistance.
                        > >
                        > > We have some UK specialist in respiratory physio coming out to
                        > > Brisbane to talk about cough assists etc soon so hopefully we can
                        > > get an invite to hear what he has to say.
                        > >
                        > > Finally, I was wondering if anyone elses boys have had teeth
                        > > problems? Zac has had 2 lots of surgery for his teeth and will
                        need
                        > > one later due to his high palate. His other surgery was due to
                        his
                        > > teeth being talky and decayed when they first came down so they
                        were
                        > > removed and crowns put in.
                        > > Hope all is well with everyone
                        > > Cheers
                        > > SImone
                        > >
                        > >
                        > >
                        >


                      • jacqschadee
                        Hi all, I am sorry to tell you that one of the three boys with MTM in The Netherlands passed away Friday 11th of August. His name is Cameron. He was 7 months
                        Message 11 of 12 , Aug 20, 2006
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                          Hi all,

                          I am sorry to tell you that one of the three boys with MTM in The Netherlands passed away
                          Friday 11th of August. His name is Cameron. He was 7 months old, his parents Marc and
                          Petra were preparing to take him home from the hospital, finally. He was not trached, nor
                          did he have a nasal canula, he was just on CPAP when he was in trouble, which was hardly
                          ever the case.
                          Then he had a severe pneumonia, which had happened before, so his parents were not too
                          concerned. But very unexpectedly, he passed away last Friday as a result of a cardiac
                          arrest. His heart had probably been working too hard or was enlarged, I don't know. His
                          website is http://www.cameronstok.mijnbabyinfo.nl/baby/pages/diary.cfm

                          So I just wanted to say, heart problems are not unfamiliar for children with MTM, we have
                          talked about that before in this Yahoo group. Our little Ingo also passed away age 4,5
                          months as his heart couldn't take it anymore.But maybe for older children it is not as
                          threatening as it is for little babies, who are less strong anyway.

                          Take care
                          Jacqueline.



                          --- In Myotubular_Myopathy@yahoogroups.com, "jonnynomates1" <jonnynomates1@...>
                          wrote:
                          >
                          >
                          > Hello, and welcome to the group, My name is Jon, on 26th aug 2005
                          > we had a baby boy called Archie, at birth he was having respiratory
                          > difficulty and rushed to NICU, where he was intubated, he gradually
                          > improved and only needed CPAP after 1 month, he made steady progress
                          > but was extremely fragile and after 5 months in Intensive care he
                          > slipped away from us.
                          >
                          > You mentioned about Heart problems and although the heart is an
                          > involuntary muscle and is not affected directly, my little Archie
                          > suffered a Cardiac Arrest and after 45 mins of Adrenaline shots and
                          > Cardiac massage he died.
                          >
                          > Archie is not the only child to have passed away from Cardiac failure
                          > and I know of 3 other cases, all I can say is that perhaps with all
                          > the extra effort (particularly in more severe cases and babies)
                          > placed on the heart it is no surprise that that some of these
                          > children have heart difficulties, I do hope I am not scaring anyone
                          > as it seems most mtm children dont suffer cardiac failure, just that
                          > there may be a link in some cases caused by the extra work.
                          >
                          > regards
                          >
                          > Jon
                          >
                          > --- In Myotubular_Myopathy@yahoogroups.com, "Scott & Betsy Grant"
                          > <scottnbets@> wrote:
                          > >
                          > > Dear everyone,
                          > > dental problems, liver problems, heart problems....Hi, my name is
                          > Betsy
                          > > Grant, my 9-year-old son Kyle has MTM. I just joined this group, I
                          > wasn't
                          > > aware of it before (although I wasn't really looking for a group)
                          > and am
                          > > very happy to have found it!
                          > > We live in the Northeastern US, 200 miles north of Boston, in case
                          > anybody's
                          > > curious.
                          > > You mentioned a couple of things that caught my attention. One is
                          > the heart
                          > > irregularity, I hadn't heard of any heart problems before with
                          > these kids.
                          > > I'd be interested to know what you find out after the cardio
                          > graph, I wonder
                          > > if they'll do an echocardiogram as well. (which is an ultrasound
                          > of the
                          > > heart)
                          > > My son was born with an extremely high palate which has come down
                          > a bit, his
                          > > teeth don't align correctly for chewing, at this point either,
                          > which of
                          > > course it may not ever be an issue. One orthodontist did say
                          > something about
                          > > his tooth enamel looking damaged, but no one else has ever said
                          > that, and
                          > > he's been to a few different dentists. No one has talked to me
                          > about him
                          > > needing any major surgery unless we wanted to prepare his mouth
                          > for chewing.
                          > > Perhaps someone has another comment about this.
                          > > Our son has had liver problems, I wonder if anyone else here has
                          > had
                          > > experience with this. Shortly after he was born he developed
                          > jaundice, and
                          > > had elevated liver enzymes for awhile. The doc did an ultrasound
                          > and wanted
                          > > to do a biopsy but we flatly refused to put him through that!
                          > There was a
                          > > high probability that he wouldn't find anything, or that if he did
                          > there
                          > > wasn't anything we could do about it, and it was a very risky
                          > procedure. I
                          > > was actually disgusted with the doc for wanted to do it, he knew
                          > others had
                          > > had bleeding from this. Fortunately since then he has not had any
                          > jaundice,
                          > > but continues to have slightly elev. enzymes, which apparently
                          > causes a lot
                          > > of skin irritation and itching.
                          > > I'm curious about the cough machines, I have no experience with
                          > them, and
                          > > they do seem controversial. Perhaps there's a danger of damaging
                          > the
                          > > lungs.What is this "vest" people are referring to?? Can anyone
                          > refer me to a
                          > > website that might have more info on this device?
                          > > What are you all using for respiratory support for your sons? We
                          > are using
                          > > an LTV 950.
                          > > Lots of questions, I realize.
                          > > Thanks everyone!
                          > > Betsy
                          > >
                          > >
                          > >
                          > >
                          > > On 8/1/06, SIMONE <zacantsim70@> wrote:
                          > > >
                          > > > Hi everyone. Well we went to meet a neurologist yesterday and
                          > he was
                          > > > great. He has started a neuromuscular clinic here in brisbane the
                          > > > ifrst of its kind. He is very knowledgeable and very personable.
                          > > > Zac really liked him.
                          > > > He did suggest Zac have a cardio graph because he said his
                          > heartbeat
                          > > > was irregular. So we are waiting on an appointment with the
                          > > > cardiologist. We thought the heart was unaffected with MTM but he
                          > > > said that due to zacs weak muscles he can have irregularities.
                          > Does
                          > > > anyone elses boys have heart problems? We are a little concerned.
                          > > >
                          > > > The neurologist also suggested that we trial zac on a cough
                          > assist
                          > > > machine to help with his weak cough and clearing secretions. Does
                          > > > anyone else use these and are they affective? Zacs respiratory
                          > > > specialist is totally against them so we have never used them. I
                          > > > wish we could have at least let Trent try it as perhaps he may
                          > still
                          > > > be here with this assistance.
                          > > >
                          > > > We have some UK specialist in respiratory physio coming out to
                          > > > Brisbane to talk about cough assists etc soon so hopefully we can
                          > > > get an invite to hear what he has to say.
                          > > >
                          > > > Finally, I was wondering if anyone elses boys have had teeth
                          > > > problems? Zac has had 2 lots of surgery for his teeth and will
                          > need
                          > > > one later due to his high palate. His other surgery was due to
                          > his
                          > > > teeth being talky and decayed when they first came down so they
                          > were
                          > > > removed and crowns put in.
                          > > > Hope all is well with everyone
                          > > > Cheers
                          > > > SImone
                          > > >
                          > > >
                          > > >
                          > >
                          >
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