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3202Re: [Myotubular_Myopathy] Zac's heart irregularity

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  • DARLENE MILLER
    Aug 1, 2006
      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

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