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3268Re: [Myotubular_Myopathy] Re: Zac's heart irregularity

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  • Scott & Betsy Grant
    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
      > >
      > >
      > >
      >


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