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Re:Mandibular Distraction

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  • AMNCE
    I have no info about this. But I know a lot about g-tubes. My AMC daughter (age 22 months) has one, but so does my non-AMC son. He s 18 and has been tube fed
    Message 1 of 6 , Dec 3, 2008
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      I have no info about this. But I know a lot about g-tubes.

      My AMC daughter (age 22 months) has one, but so does my non-AMC son. He's 18 and has been tube fed his entire life. So we've done the gamut of central lines, G-tubes, various brands of buttons, and even G/J tubes.

      What kinds of info are you looking for?

      Pam
    • Brenda Summers
      I have a son, 20  with AMC who has been tube feed his entire life also. Brenda ... From: AMNCE Subject: [Arthrogryposis Support Group]
      Message 2 of 6 , Dec 5, 2008
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        I have a son, 20  with AMC who has been tube feed his entire life also.
        Brenda

        --- On Wed, 12/3/08, AMNCE <amnce@...> wrote:

        From: AMNCE <amnce@...>
        Subject: [Arthrogryposis Support Group] Re:Mandibular Distraction
        To: arthrogryposissupportgroup@yahoogroups.com
        Date: Wednesday, December 3, 2008, 5:03 PM






        I have no info about this. But I know a lot about g-tubes.

        My AMC daughter (age 22 months) has one, but so does my non-AMC son. He's 18 and has been tube fed his entire life. So we've done the gamut of central lines, G-tubes, various brands of buttons, and even G/J tubes.

        What kinds of info are you looking for?

        Pam


















        [Non-text portions of this message have been removed]
      • Beverly R Hanset-Burch
        I am looking for ways to get my daughter to eat orally and not always be tube dependent. Currently her jaw only moves so much. It is stopped by her back teeth
        Message 3 of 6 , Dec 5, 2008
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          I am looking for ways to get my daughter to eat orally and not always be tube dependent.

          Currently her jaw only moves so much. It is stopped by her back teeth hitting too early.

          Your son that is 20, how is he other wise?
          ----- Original Message -----
          From: Brenda Summers
          To: arthrogryposissupportgroup@yahoogroups.com
          Sent: Friday, December 05, 2008 1:44 PM
          Subject: Re: [Arthrogryposis Support Group] Re:Mandibular Distraction


          I have a son, 20 with AMC who has been tube feed his entire life also.
          Brenda

          --- On Wed, 12/3/08, AMNCE <amnce@...> wrote:

          From: AMNCE <amnce@...>
          Subject: [Arthrogryposis Support Group] Re:Mandibular Distraction
          To: arthrogryposissupportgroup@yahoogroups.com
          Date: Wednesday, December 3, 2008, 5:03 PM

          I have no info about this. But I know a lot about g-tubes.

          My AMC daughter (age 22 months) has one, but so does my non-AMC son. He's 18 and has been tube fed his entire life. So we've done the gamut of central lines, G-tubes, various brands of buttons, and even G/J tubes.

          What kinds of info are you looking for?

          Pam

          [Non-text portions of this message have been removed]





          [Non-text portions of this message have been removed]
        • Brenda Summers
          Jeff eats by mouth , the tube is for medicine, he started of not eating but by the time he was four he could eat everything by mouth.  He has a limited
          Message 4 of 6 , Dec 6, 2008
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            Jeff eats by mouth , the tube is for medicine, he started of not eating but by the time he was four he could eat everything by mouth.  He has a limited opening so he eats slowly.  Jeff can't do alot by himself he is 100% dependent on someone else pretty much for everything, eating, dressing, toileting, but he is a very happy person we try to do as much as possible with him.  He goes boating, we have a pontoon boat that his chair fits on, we fish, we go to alot of movies, he's on the computer alot and plays alot of video games.  He just graduated from highschool over the summer, we'er not sure about college yet. Jeff was severly involved at birth both arms, hands, feet, legs, spine, and jaw.
                                                                                                                Brenda

            --- On Fri, 12/5/08, Beverly R Hanset-Burch <beverlyhansetburch@...> wrote:

            From: Beverly R Hanset-Burch <beverlyhansetburch@...>
            Subject: Re: [Arthrogryposis Support Group] Re:Mandibular Distraction
            To: arthrogryposissupportgroup@yahoogroups.com
            Date: Friday, December 5, 2008, 3:56 PM






            I am looking for ways to get my daughter to eat orally and not always be tube dependent.

            Currently her jaw only moves so much. It is stopped by her back teeth hitting too early.

            Your son that is 20, how is he other wise?
            ----- Original Message -----
            From: Brenda Summers
            To: arthrogryposissuppo rtgroup@yahoogro ups.com
            Sent: Friday, December 05, 2008 1:44 PM
            Subject: Re: [Arthrogryposis Support Group] Re:Mandibular Distraction

            I have a son, 20 with AMC who has been tube feed his entire life also.
            Brenda

            --- On Wed, 12/3/08, AMNCE <amnce@yahoo. com> wrote:

            From: AMNCE <amnce@yahoo. com>
            Subject: [Arthrogryposis Support Group] Re:Mandibular Distraction
            To: arthrogryposissuppo rtgroup@yahoogro ups.com
            Date: Wednesday, December 3, 2008, 5:03 PM

            I have no info about this. But I know a lot about g-tubes.

            My AMC daughter (age 22 months) has one, but so does my non-AMC son. He's 18 and has been tube fed his entire life. So we've done the gamut of central lines, G-tubes, various brands of buttons, and even G/J tubes.

            What kinds of info are you looking for?

            Pam

            [Non-text portions of this message have been removed]

            [Non-text portions of this message have been removed]


















            [Non-text portions of this message have been removed]
          • Beverly R Hanset-Burch
            Thanks for your response. My middle son is named Jeff! So Jeff didn t have a weak swallow associated with muscles but rather bone issues? Bonnie loves to fish.
            Message 5 of 6 , Dec 6, 2008
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              Thanks for your response. My middle son is named Jeff!
              So Jeff didn't have a weak swallow associated with muscles but rather bone issues?

              Bonnie loves to fish. We took her out for king salmon with a wagon and caught a few. She likes boating as well.
              ----- Original Message -----
              From: Brenda Summers
              To: arthrogryposissupportgroup@yahoogroups.com
              Sent: Saturday, December 06, 2008 9:49 AM
              Subject: Re: [Arthrogryposis Support Group] Re:Mandibular Distraction


              Jeff eats by mouth , the tube is for medicine, he started of not eating but by the time he was four he could eat everything by mouth. He has a limited opening so he eats slowly. Jeff can't do alot by himself he is 100% dependent on someone else pretty much for everything, eating, dressing, toileting, but he is a very happy person we try to do as much as possible with him. He goes boating, we have a pontoon boat that his chair fits on, we fish, we go to alot of movies, he's on the computer alot and plays alot of video games. He just graduated from highschool over the summer, we'er not sure about college yet. Jeff was severly involved at birth both arms, hands, feet, legs, spine, and jaw.
              Brenda

              --- On Fri, 12/5/08, Beverly R Hanset-Burch <beverlyhansetburch@...> wrote:

              From: Beverly R Hanset-Burch <beverlyhansetburch@...>
              Subject: Re: [Arthrogryposis Support Group] Re:Mandibular Distraction
              To: arthrogryposissupportgroup@yahoogroups.com
              Date: Friday, December 5, 2008, 3:56 PM

              I am looking for ways to get my daughter to eat orally and not always be tube dependent.

              Currently her jaw only moves so much. It is stopped by her back teeth hitting too early.

              Your son that is 20, how is he other wise?
              ----- Original Message -----
              From: Brenda Summers
              To: arthrogryposissuppo rtgroup@yahoogro ups.com
              Sent: Friday, December 05, 2008 1:44 PM
              Subject: Re: [Arthrogryposis Support Group] Re:Mandibular Distraction

              I have a son, 20 with AMC who has been tube feed his entire life also.
              Brenda

              --- On Wed, 12/3/08, AMNCE <amnce@yahoo. com> wrote:

              From: AMNCE <amnce@yahoo. com>
              Subject: [Arthrogryposis Support Group] Re:Mandibular Distraction
              To: arthrogryposissuppo rtgroup@yahoogro ups.com
              Date: Wednesday, December 3, 2008, 5:03 PM

              I have no info about this. But I know a lot about g-tubes.

              My AMC daughter (age 22 months) has one, but so does my non-AMC son. He's 18 and has been tube fed his entire life. So we've done the gamut of central lines, G-tubes, various brands of buttons, and even G/J tubes.

              What kinds of info are you looking for?

              Pam

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