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New to the group with some questions

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  • christine
    Hello, I am new to the group searching for some answers that hopefully someone on the board can answer or perhaps lead me in a direction for help. We have a
    Message 1 of 6 , May 28 6:46 AM
      Hello,

      I am new to the group searching for some answers that hopefully someone on the board can answer or perhaps lead me in a direction for help.

      We have a very long story so as not to bore anyone with the details I will simply ask if anyone has a child (or themself) that has arthrogryposis and clubbed feet. Our daughter (9yrs old) born with bilateral clubbed feet has undergone months and months of serial castings, surgeries and so forth with absolutely no improvement. Our Ortho surgeon in NYC suggested she might have a arthrogryposis to an extent. My husband and I are banging our heads against the wall as to what could be causing her feet to constantly relapse. She does have very tight foot muscles in both feet. If anyone has had a similar situation and can email me that would be great. I would love to connect with someone with a similar situation and honestly have not found anyone!....

      Thanks so much!
      Christine
      Mom to Lulu
    • Theresa Lucas
      Hi! May I suggest joining amcsupport.org forums http://www.amcsupport.org/supportforums.html ~Theresa Lucas http://www.theresalucas.com Arthrogryposis
      Message 2 of 6 , Jun 25, 2013
        Hi!
        May I suggest joining amcsupport.org forums
        http://www.amcsupport.org/supportforums.html


        ~Theresa Lucas
        http://www.theresalucas.com
        Arthrogryposis Multiplex Congenita Support, Inc.~ President
        http://www.amcsupport.org
        Art Association of Madison County, Inc Student Exhibition Coordinator
        http://www.studentartexhibit.webs.com
        On Tue, May 28, 2013 at 9:46 AM, christine <cvbeachnut@...> wrote:

        > **
        >
        >
        > Hello,
        >
        > I am new to the group searching for some answers that hopefully someone on
        > the board can answer or perhaps lead me in a direction for help.
        >
        > We have a very long story so as not to bore anyone with the details I will
        > simply ask if anyone has a child (or themself) that has arthrogryposis and
        > clubbed feet. Our daughter (9yrs old) born with bilateral clubbed feet has
        > undergone months and months of serial castings, surgeries and so forth with
        > absolutely no improvement. Our Ortho surgeon in NYC suggested she might
        > have a arthrogryposis to an extent. My husband and I are banging our heads
        > against the wall as to what could be causing her feet to constantly
        > relapse. She does have very tight foot muscles in both feet. If anyone has
        > had a similar situation and can email me that would be great. I would love
        > to connect with someone with a similar situation and honestly have not
        > found anyone!....
        >
        > Thanks so much!
        > Christine
        > Mom to Lulu
        >
        >
        >



        --


        [Non-text portions of this message have been removed]
      • Jenessa
        i am in nyc as well. what ortho are you seeing on nyc? there is an arthrogryposis clinic at NYU and they would be very adept in dealing with difficult club
        Message 3 of 6 , Jun 26, 2013
          i am in nyc as well. what ortho are you seeing on nyc? there is an arthrogryposis clinic at NYU and they would be very adept in dealing with difficult club foot cases. here is the link for the clinic


          centerforchildren.med.nyu.edu/arthrogryposis-center

          there is also dr. van bosse at philadelphia's shriners hospital ~ he is supposed to be the best.


          what kind of surgeries has she had?

          jenessa

          --- In arthrogryposissupportgroup@yahoogroups.com, Theresa Lucas <amcreesa@...> wrote:
          >
          > Hi!
          > May I joining amcsupport.org forums
          > http://www.amcsupport.org/supportforums.html
          >
          >
          > ~Theresa Lucas
          > http://www.theresalucas.com
          > Arthrogryposis Multiplex Congenita Support, Inc.~ President
          > http://www.amcsupport.org
          > Art Association of Madison County, Inc Student Exhibition Coordinator
          > http://www.studentartexhibit.webs.com
          > On Tue, May 28, 2013 at 9:46 AM, christine <cvbeachnut@...> wrote:
          >
          > > **
          > >
          > >
          > > Hello,
          > >
          > > I am new to the group searching for some answers that hopefully someone on
          > > the board can answer or perhaps lead me in a direction for help.
          > >
          > > We have a very long story so as not to bore anyone with the details I will
          > > simply ask if anyone has a child (or themself) that has arthrogryposis and
          > > clubbed feet. Our daughter (9yrs old) born with bilateral clubbed feet has
          > > undergone months and months of serial castings, surgeries and so forth with
          > > absolutely no improvement. Our Ortho surgeon in NYC suggested she might
          > > have a arthrogryposis to an extent. My husband and I are banging our heads
          > > against the wall as to what could be causing her feet to constantly
          > > relapse. She does have very tight foot muscles in both feet. If anyone has
          > > had a similar situation and can email me that would be great. I would love
          > > to connect with someone with a similar situation and honestly have not
          > > found anyone!....
          > >
          > > Thanks so much!
          > > Christine
          > > Mom to Lulu
          > >
          > >
          > >
          >
          >
          >
          > --
          >
          >
          > [Non-text portions of this message have been removed]
          >
        • christine hunter
          Hi Jenessa, We see Dr. Hyman at Columbia Presbyterian. He was recommended to us by Dr. Morcuende in Iowa. My friend see Dr. Van Bosse in Philly, her son has
          Message 4 of 6 , Jun 26, 2013
            Hi Jenessa,
            We see Dr. Hyman at Columbia Presbyterian. He was recommended to us by Dr.
            Morcuende in Iowa. My friend see Dr. Van Bosse in Philly, her son has very
            difficult feet as well. We are considering flying to St. Louis to see Dr.
            Dobbs I have been emailing him. He has done a lot of research on
            neurological clubbed feet. Do you see someone specific in NYC???

            Lulu has had ATTT surgery that failed. We then discovered she had a
            tethered cord so she was de-tethered by Dr. Feldstein at Columbia Pres.
            About 16 months ago she had cuboid/calcaneal osteotomies. We were told
            this was the best surgery for her to achieve an anatomically correct foot,
            which it did not. At our last appointment our Dr. suggested Lulu may have
            a "mild" form of Arthrogryposis. This is what led me to the group. Her
            feet are very tight, she has virtually no toe movement and her toes curl
            under. She does not bend her knees when she walks either.

            I am going to check out the link you sent me!

            Thanks so much for you help!
            Christine



            On Wed, Jun 26, 2013 at 3:16 PM, Jenessa <jenessagunther@...> wrote:

            > **
            >
            >
            >
            >
            > i am in nyc as well. what ortho are you seeing on nyc? there is an
            > arthrogryposis clinic at NYU and they would be very adept in dealing with
            > difficult club foot cases. here is the link for the clinic
            >
            > centerforchildren.med.nyu.edu/arthrogryposis-center
            >
            > there is also dr. van bosse at philadelphia's shriners hospital ~ he is
            > supposed to be the best.
            >
            > what kind of surgeries has she had?
            >
            > jenessa
            >
            > --- In arthrogryposissupportgroup@yahoogroups.com, Theresa Lucas
            > <amcreesa@...> wrote:
            > >
            > > Hi!
            > > May I joining amcsupport.org forums
            >
            > > http://www.amcsupport.org/supportforums.html
            > >
            > >
            > > ~Theresa Lucas
            > > http://www.theresalucas.com
            > > Arthrogryposis Multiplex Congenita Support, Inc.~ President
            > > http://www.amcsupport.org
            > > Art Association of Madison County, Inc Student Exhibition Coordinator
            > > http://www.studentartexhibit.webs.com
            > > On Tue, May 28, 2013 at 9:46 AM, christine <cvbeachnut@...> wrote:
            > >
            > > > **
            > > >
            > > >
            > > > Hello,
            > > >
            > > > I am new to the group searching for some answers that hopefully
            > someone on
            > > > the board can answer or perhaps lead me in a direction for help.
            > > >
            > > > We have a very long story so as not to bore anyone with the details I
            > will
            > > > simply ask if anyone has a child (or themself) that has arthrogryposis
            > and
            > > > clubbed feet. Our daughter (9yrs old) born with bilateral clubbed feet
            > has
            > > > undergone months and months of serial castings, surgeries and so forth
            > with
            > > > absolutely no improvement. Our Ortho surgeon in NYC suggested she might
            > > > have a arthrogryposis to an extent. My husband and I are banging our
            > heads
            > > > against the wall as to what could be causing her feet to constantly
            > > > relapse. She does have very tight foot muscles in both feet. If anyone
            > has
            > > > had a similar situation and can email me that would be great. I would
            > love
            > > > to connect with someone with a similar situation and honestly have not
            > > > found anyone!....
            > > >
            > > > Thanks so much!
            > > > Christine
            > > > Mom to Lulu
            > > >
            > > >
            > > >
            > >
            > >
            > >
            > > --
            > >
            > >
            > > [Non-text portions of this message have been removed]
            > >
            >
            >
            >


            [Non-text portions of this message have been removed]
          • Maria
            Hi Christine, We are from Ottawa , Canada. our daughter Mia (3) was born with distal arthropryposis, her fingers and feet were tight. To correct her feet, she
            Message 5 of 6 , Jun 27, 2013
              Hi Christine,
              We are from Ottawa , Canada. our daughter Mia (3) was born with distal arthropryposis, her fingers and feet were tight. To correct her feet, she had cast for several months and surgery at the age of 6 months old on her left foot. The Left foot was a more difficult case, so she had a second surgery last November 2012. Dr. Willis from the Children Hospital ofOntario, is her orthopedist; at the last visit two weeks ago , He said the results of the surgery were good, and that she will be able to do all kind of activities. so far, Mia is able to walk, run, jump, etc. We still have to watch for her left foot.
              Hope your daughter find the help she needs in the US, or maybe you like to look what they are doing in Canada as well.


              Maria
              Sent from my iPad

              On 2013-06-26, at 8:36 PM, christine hunter <cvbeachnut@...> wrote:

              > Hi Jenessa,
              > We see Dr. Hyman at Columbia Presbyterian. He was recommended to us by Dr.
              > Morcuende in Iowa. My friend see Dr. Van Bosse in Philly, her son has very
              > difficult feet as well. We are considering flying to St. Louis to see Dr.
              > Dobbs I have been emailing him. He has done a lot of research on
              > neurological clubbed feet. Do you see someone specific in NYC???
              >
              > Lulu has had ATTT surgery that failed. We then discovered she had a
              > tethered cord so she was de-tethered by Dr. Feldstein at Columbia Pres.
              > About 16 months ago she had cuboid/calcaneal osteotomies. We were told
              > this was the best surgery for her to achieve an anatomically correct foot,
              > which it did not. At our last appointment our Dr. suggested Lulu may have
              > a "mild" form of Arthrogryposis. This is what led me to the group. Her
              > feet are very tight, she has virtually no toe movement and her toes curl
              > under. She does not bend her knees when she walks either.
              >
              > I am going to check out the link you sent me!
              >
              > Thanks so much for you help!
              > Christine
              >
              > On Wed, Jun 26, 2013 at 3:16 PM, Jenessa <jenessagunther@...> wrote:
              >
              > > **
              > >
              > >
              > >
              > >
              > > i am in nyc as well. what ortho are you seeing on nyc? there is an
              > > arthrogryposis clinic at NYU and they would be very adept in dealing with
              > > difficult club foot cases. here is the link for the clinic
              > >
              > > centerforchildren.med.nyu.edu/arthrogryposis-center
              > >
              > > there is also dr. van bosse at philadelphia's shriners hospital ~ he is
              > > supposed to be the best.
              > >
              > > what kind of surgeries has she had?
              > >
              > > jenessa
              > >
              > > --- In arthrogryposissupportgroup@yahoogroups.com, Theresa Lucas
              > > <amcreesa@...> wrote:
              > > >
              > > > Hi!
              > > > May I joining amcsupport.org forums
              > >
              > > > http://www.amcsupport.org/supportforums.html
              > > >
              > > >
              > > > ~Theresa Lucas
              > > > http://www.theresalucas.com
              > > > Arthrogryposis Multiplex Congenita Support, Inc.~ President
              > > > http://www.amcsupport.org
              > > > Art Association of Madison County, Inc Student Exhibition Coordinator
              > > > http://www.studentartexhibit.webs.com
              > > > On Tue, May 28, 2013 at 9:46 AM, christine <cvbeachnut@...> wrote:
              > > >
              > > > > **
              > > > >
              > > > >
              > > > > Hello,
              > > > >
              > > > > I am new to the group searching for some answers that hopefully
              > > someone on
              > > > > the board can answer or perhaps lead me in a direction for help.
              > > > >
              > > > > We have a very long story so as not to bore anyone with the details I
              > > will
              > > > > simply ask if anyone has a child (or themself) that has arthrogryposis
              > > and
              > > > > clubbed feet. Our daughter (9yrs old) born with bilateral clubbed feet
              > > has
              > > > > undergone months and months of serial castings, surgeries and so forth
              > > with
              > > > > absolutely no improvement. Our Ortho surgeon in NYC suggested she might
              > > > > have a arthrogryposis to an extent. My husband and I are banging our
              > > heads
              > > > > against the wall as to what could be causing her feet to constantly
              > > > > relapse. She does have very tight foot muscles in both feet. If anyone
              > > has
              > > > > had a similar situation and can email me that would be great. I would
              > > love
              > > > > to connect with someone with a similar situation and honestly have not
              > > > > found anyone!....
              > > > >
              > > > > Thanks so much!
              > > > > Christine
              > > > > Mom to Lulu
              > > > >
              > > > >
              > > > >
              > > >
              > > >
              > > >
              > > > --
              > > >
              > > >
              > > > [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]
            • scampsey143
              Hi Christine I know this is an older post but I m justnow seeing it! My Son is only 3.5 but has been Dx with both arthrogyrprosis and B clubb feet since birth.
              Message 6 of 6 , Feb 5, 2014

                Hi Christine I know this is an older post but I'm justnow seeing it! My Son is only 3.5 but has been Dx with both arthrogyrprosis and B clubb feet since birth. So far only his lower extremities are affected from the Arthrogryprosis. We've been through more weeks of serial casting than I can count in addition to the surgeries and know that he will more than likely require at least 2 more on his R foot once he's alittle older. If you have any questions I'm happy to anwser! My email is scampsey143@... or facebook might work easier since I'm rarely on this group https://www.facebook.com/#!/scampsey Hope things are well with your daughter!

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