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3234Re: [Myotubular_Myopathy] Zac's heart irregularity

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  • Scott & Betsy Grant
    Aug 6 5:19 AM
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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!

      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

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