Loading ...
Sorry, an error occurred while loading the content.

Crohn's Disease

Expand Messages
  • Donna Lawton
    Hello Everyone, I m new to the group, my son Mitchell is 14y/o and was diagnosed with MTM when he was 5 months old. It has been 14 years of a lot of roller
    Message 1 of 3 , Jan 23, 2005
    • 0 Attachment
      Hello Everyone,

      I'm new to the group, my son Mitchell is 14y/o and was diagnosed
      with MTM when he was 5 months old. It has been 14 years of a lot of
      roller coaster rides. Just when one problem is worked out, it seems
      like another one surfaces. Luckily, Mitchell has an amazing
      attitude and a great sense of humor that inspires us and all of
      those around him.

      My question is, have any of your children been diagnosed with
      Crohn's Disease? Mitchell received his diagnosis this last spring
      and is on medication that has helped tremendously with his
      diarrhea. Looking back, he has probably had Crohn's for a long
      time. We blamed the diarrhea on his tube feedings.

      I'm curious if the mutated gene that causes our children to have MTM
      could also be the source of Crohn's Disease. We have no history in
      our family of either disease.

      Mitchell also has severe osteopenia, brittle bones, due to the lack
      of weight barring and also due to malabsorption that Crohn's causes.
      Last September he broke his femur at school. Simply got knocked
      down and it broke, luckily not all the way through however.

      Thanks to all for being there,

      Donna
    • ANN MILLER
      Hi Donna, Nothing has been said about Crohn s Disease with Kyle. My understanding of the disease is that it usually doesn t show up until teenage/early
      Message 2 of 3 , Jan 24, 2005
      • 0 Attachment
        Hi Donna,
         
        Nothing has been said about Crohn's Disease with Kyle.  My understanding
        of the disease is that it usually doesn't show up until teenage/early twenties.
        Is caused by a bacterial infections that doesn't clear up completely in the
        intestines and/or a weak immune system.  It is something that may show up
        as Kyle gets older as he is prone to bacterial infections and his immune system
        is weak. It is something to ask the Doctors about.  As far as brittle bones, we
        have been lucky, Kyle seems to be ok.  We haven't had any broken bones or
        the doctors say he has anything else.  There are several boys who have had
        broken bones so I know it is possible.  Kyle's biggest problem is his lungs, he
        is always getting pnemonia, collasped lung and has desatting episodes.
         
        How is Mitchell doing overall?  Is he able to walk or does he use a
        wheelchair at school?  Is he on a vent?  Would like to know more about
        Mitchell!  He sounds like a great kid.  Kyle also has a great sense of humor
        and attitude even though he is only 3 years old.  He likes to joke with everyone.
         
        As you said, it's like a roller coaster ride, everytime we clear up one thing some-
        thing else comes up.  Kyle can't just get a cold, he has to get two or three
        things at one time.  Never a dull moment! 
         
        Take care,
         
        Darlene
        ----- Original Message -----
        Sent: Sunday, January 23, 2005 1:03 PM
        Subject: [Myotubular_Myopathy] Crohn's Disease



        Hello Everyone,

        I'm new to the group, my son Mitchell is 14y/o and was diagnosed
        with MTM when he was 5 months old.  It has been 14 years of a lot of
        roller coaster rides. Just when one problem is worked out, it seems
        like another one surfaces.  Luckily, Mitchell has an amazing
        attitude and a great sense of humor that inspires us and all of
        those around him.

        My question is, have any of your children been diagnosed with
        Crohn's Disease?  Mitchell received his diagnosis this last spring
        and is on medication that has helped tremendously with his
        diarrhea.  Looking back, he has probably had Crohn's for a long
        time.  We blamed the diarrhea on his tube feedings.

        I'm curious if the mutated gene that causes our children to have MTM
        could also be the source of Crohn's Disease.  We have no history in
        our family of either disease. 

        Mitchell also has severe osteopenia, brittle bones, due to the lack
        of weight barring and also due to malabsorption that Crohn's causes.
        Last September he broke his femur at school.  Simply got knocked
        down and it broke, luckily not all the way through however.

        Thanks to all for being there,

        Donna





        ------------------------ Yahoo! Groups Sponsor --------------------~-->
        Help save the life of a child.  Support St. Jude Children's Research Hospital's
        'Thanks & Giving.'
        http://us.click.yahoo.com/0iazvD/5WnJAA/xGEGAA/VzSolB/TM
        --------------------------------------------------------------------~->

         
        Yahoo! Groups Links

        <*> To visit your group on the web, go to:
            http://groupsyahoo.com/group/Myotubular_Myopathy/

        <*> To unsubscribe from this group, send an email to:
            Myotubular_Myopathy-unsubscribe@yahoogroups.com

        <*> Your use of Yahoo! Groups is subject to:
            http://docs.yahoo.com/info/terms/
         



      • Shannon
        Hello Donna, My son, Javad, was diagnosed with Centronuclear Myopathy just over a year ago. He turned three this last November. Javad has not been diagnosed
        Message 3 of 3 , Jan 29, 2005
        • 0 Attachment
          Hello Donna,

          My son, Javad, was diagnosed with Centronuclear Myopathy just over a
          year ago. He turned three this last November. Javad has not been
          diagnosed with Crohn's, but does have eating issues. He has a g-tube
          that was placed at 10 days and has been taking prilosec for a few
          years. Last summer he had a nissen, which has helped his reflux. Javad
          has had issues with Osteoporosis. He was diagnosed last year (1 year
          ago) and has been doing infusions of pamidronate every two months for
          a year. It has made a huge difference in his bones. He gained 27% bone
          density last year. Do you know about this treatment?

          Please tell us more about Mitchell. All of our children are younger.

          Hope to talk to you more soon! If you want to see Javad, go to
          www.caringbridge.org/or/javad

          Shannon Mashinchi
        Your message has been successfully submitted and would be delivered to recipients shortly.