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Re: AMC

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  • Sandi Waymire
    Hi all, I sort of hate to say welcome to the group as it means you now struggle w/ AMC in some form. However, as Naomi said, God is in control and even
    Message 1 of 4 , Mar 1, 2004
      Hi all,
      I sort of hate to say "welcome to the group" as it
      means you now struggle w/ AMC in some form. However,
      as Naomi said, God is in control and even though He
      didn't "give" AMC to our daughter He has given us
      grace, patience, peace and so many other things that
      have helped us cope, survive and see the positives in
      this.
      Our daughter is 14. She has distal arthrogryposis.
      This means her hand and feet are the most affected.
      Her foot dr is one of the tops in the world (others
      come here to study some of his techniques!!!). He
      also bought cars from my fil. That connection really
      helped. He started casting at 6 weeks on her feet.
      We did splints on her hands. The tops of her feet
      were touching the fronts of her legs. One hand was up
      and one hand was down at the wrists. She sat alone at
      about the normal time. She was trying to walk in her
      casts. Her foot surgeries were at 11 months. She was
      in "bent leg" casts for several weeks. She tried (and
      succeeded) to walk (holding on to things) in those
      bent leg casts. She has had several hand surgeries
      over the years and will have at least one more to fuse
      her thumb.
      She can't put her hair in a pony tail by herself and
      has just recently been able to put on her own socks.
      She can wash her own hair because we got a hand held
      shower head that she can use as a sort of scrubber.
      For the most part she is a "normal" kid. We haven't
      had to make many adjustments for her.
      Ask lots of questions and don't feel bad about getting
      second opinions. AMC isn't something most doctors
      know much about and certainly don't have many patients
      w/ this condition. (Can I vent? We went to a dr 2
      weeks ago who kept calling AMC "her disease". It
      surprised me so I didn't call him on it but be
      prepared for such things and feel free to call the dr
      on it. Don't be like me and have to have 2 hours to
      come up w/ a response to something like that! lol)
      This group is a good source of encouragement. Feel
      free to come here anytime. Keep in mind that I don't
      know how to be short winded!!! roflmbo
      Have a good week!!
      Sandi in Arkansas

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    • Margie Borchers
      H Sandi, Thank you so much for your reply. You know I was thinking that Alyse s diagnosis has never really been narrowed down to whether is is distal
      Message 2 of 4 , Mar 1, 2004
        H Sandi,

        Thank you so much for your reply. You know I was thinking that Alyse's diagnosis has never really been narrowed down to whether is is distal arthrogryposis or AMC. I think it's AMC, but right now they have only labeled it arthrogryposis and micronathia (small chin). What makes it AMC? Is it the amyoplasia? The neurologist has not determined if the muscles are just weak because of the nonmovement, or if it is a nueromuscular disorder. The genetist said that she definitely moved for a while in the womb, until she got stuck. I'm hoping that is a good sign that the development was normal, just the lack of space and the abnormal wall caused the problems. I really don't know if we ever will get the exact answer because I don't believe anyone knows but God. Just as He is in control of what happens from now on.

        I know my daughter Alexis would love to get more info from you as time passes. Thanks again for responding, it really helps to know others understand.

        God Bless,
        Margie

        Sandi Waymire <sandiwaymire@...> wrote:
        Hi all,
        I sort of hate to say "welcome to the group" as it
        means you now struggle w/ AMC in some form. However,
        as Naomi said, God is in control and even though He
        didn't "give" AMC to our daughter He has given us
        grace, patience, peace and so many other things that
        have helped us cope, survive and see the positives in
        this.
        Our daughter is 14. She has distal arthrogryposis.
        This means her hand and feet are the most affected.
        Her foot dr is one of the tops in the world (others
        come here to study some of his techniques!!!). He
        also bought cars from my fil. That connection really
        helped. He started casting at 6 weeks on her feet.
        We did splints on her hands. The tops of her feet
        were touching the fronts of her legs. One hand was up
        and one hand was down at the wrists. She sat alone at
        about the normal time. She was trying to walk in her
        casts. Her foot surgeries were at 11 months. She was
        in "bent leg" casts for several weeks. She tried (and
        succeeded) to walk (holding on to things) in those
        bent leg casts. She has had several hand surgeries
        over the years and will have at least one more to fuse
        her thumb.
        She can't put her hair in a pony tail by herself and
        has just recently been able to put on her own socks.
        She can wash her own hair because we got a hand held
        shower head that she can use as a sort of scrubber.
        For the most part she is a "normal" kid. We haven't
        had to make many adjustments for her.
        Ask lots of questions and don't feel bad about getting
        second opinions. AMC isn't something most doctors
        know much about and certainly don't have many patients
        w/ this condition. (Can I vent? We went to a dr 2
        weeks ago who kept calling AMC "her disease". It
        surprised me so I didn't call him on it but be
        prepared for such things and feel free to call the dr
        on it. Don't be like me and have to have 2 hours to
        come up w/ a response to something like that! lol)
        This group is a good source of encouragement. Feel
        free to come here anytime. Keep in mind that I don't
        know how to be short winded!!! roflmbo
        Have a good week!!
        Sandi in Arkansas

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      • Jamila
        Hi, not sure who wrote this, but I was wondering about the casting they did on your daughter at six weeks, the dr my dauther saw said they did not do casting
        Message 3 of 4 , Mar 3, 2004
          Hi, not sure who wrote this, but I was wondering about the casting they did on your daughter at six weeks, the dr my dauther saw said they did not do casting that young, my dauther is 2 months of age, and she goes today to get her splints, and start therapy, I was wondering should I seek a second opinion about the casting, also should I take her to see a neurologist see the dr she went to did not say anything about a neurologist..or others she should see but, the PT....... I can use all the advice we can get ... Naomi

          H Sandi,

          Thank you so much for your reply. You know I was thinking that Alyse's diagnosis has never really been narrowed down to whether is is distal arthrogryposis or AMC. I think it's AMC, but right now they have only labeled it arthrogryposis and micronathia (small chin). What makes it AMC? Is it the amyoplasia? The neurologist has not determined if the muscles are just weak because of the nonmovement, or if it is a nueromuscular disorder. The genetist said that she definitely moved for a while in the womb, until she got stuck. I'm hoping that is a good sign that the development was normal, just the lack of space and the abnormal wall caused the problems. I really don't know if we ever will get the exact answer because I don't believe anyone knows but God. Just as He is in control of what happens from now on.

          I know my daughter Alexis would love to get more info from you as time passes. Thanks again for responding, it really helps to know others understand.

          God Bless,
          Margie

          Sandi Waymire <sandiwaymire@...> wrote:
          Hi all,
          I sort of hate to say "welcome to the group" as it
          means you now struggle w/ AMC in some form. However,
          as Naomi said, God is in control and even though He
          didn't "give" AMC to our daughter He has given us
          grace, patience, peace and so many other things that
          have helped us cope, survive and see the positives in
          this.
          Our daughter is 14. She has distal arthrogryposis.
          This means her hand and feet are the most affected.
          Her foot dr is one of the tops in the world (others
          come here to study some of his techniques!!!). He
          also bought cars from my fil. That connection really
          helped. He started casting at 6 weeks on her feet.
          We did splints on her hands. The tops of her feet
          were touching the fronts of her legs. One hand was up
          and one hand was down at the wrists. She sat alone at
          about the normal time. She was trying to walk in her
          casts. Her foot surgeries were at 11 months. She was
          in "bent leg" casts for several weeks. She tried (and
          succeeded) to walk (holding on to things) in those
          bent leg casts. She has had several hand surgeries
          over the years and will have at least one more to fuse
          her thumb.
          She can't put her hair in a pony tail by herself and
          has just recently been able to put on her own socks.
          She can wash her own hair because we got a hand held
          shower head that she can use as a sort of scrubber.
          For the most part she is a "normal" kid. We haven't
          had to make many adjustments for her.
          Ask lots of questions and don't feel bad about getting
          second opinions. AMC isn't something most doctors
          know much about and certainly don't have many patients
          w/ this condition. (Can I vent? We went to a dr 2
          weeks ago who kept calling AMC "her disease". It
          surprised me so I didn't call him on it but be
          prepared for such things and feel free to call the dr
          on it. Don't be like me and have to have 2 hours to
          come up w/ a response to something like that! lol)
          This group is a good source of encouragement. Feel
          free to come here anytime. Keep in mind that I don't
          know how to be short winded!!! roflmbo
          Have a good week!!
          Sandi in Arkansas

          __________________________________
          Do you Yahoo!?
          Get better spam protection with Yahoo! Mail.
          http://antispam.yahoo.com/tools


          ---------------------------------
          Yahoo! Groups Links

          To visit your group on the web, go to:
          http://groups.yahoo.com/group/arthrogryposissupportgroup/

          To unsubscribe from this group, send an email to:
          arthrogryposissupportgroup-unsubscribe@yahoogroups.com

          Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.



          ---------------------------------
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          Get better spam protection with Yahoo! Mail

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




          ---------------------------------
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          To visit your group on the web, go to:
          http://groups.yahoo.com/group/arthrogryposissupportgroup/

          To unsubscribe from this group, send an email to:
          arthrogryposissupportgroup-unsubscribe@yahoogroups.com

          Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.




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