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Re: [Myotubular_Myopathy] need advice on refluxing baby

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  • Scott & Betsy Grant
    Burcu, When my son was 8 weeks old we went from a tube in his nose to a feeding tube placed directly on his tummy through a surgical procedure. At the same
    Message 1 of 9 , Jul 12, 2007
      Burcu,
      When my son was 8 weeks old we went from a tube in his nose to a feeding tube placed directly on his tummy through a surgical procedure. At the same time, to stop the refluxing they also did a procedure called a Nissan fundoplilcation, which essentially ties off the top of the stomach so that the contents don't come back up!! From then on he was much healthier. The tube placed on his tummy is a small little thing called a Mic-key button. It usually is painless and doesn't bother him at all.
      Prayers for your little one,
      Betsy

       
      On 7/12/07, burcu <bpaltura@...> wrote:

      Dear family,
      I need your advices on how I should feed my son and prevent foreign
      substances like food to go into his lungs? At the moment he is
      beeing fed by a tube that delivers the food from his mouth to his
      stomach...

      Ilker will be 4 months old in a week. He has been diagnosed as X-
      linked MTM patient 2 months ago and is suffering from pneumonia at
      the moment...
      very recently he've had bronchoscopy that showed us large amounts of
      mucus due to inflamed and swollen bronchi...he has very thick
      secretions that lowers sat.lvls around 60s sometimes
      AND in addition to that refluxing is not helping at all!
      we will see a gastroenterologist next week if we get a positive
      result out of the nebul and PT treatments this week...
      so before we go I would be glad to hear the ideas that worked for
      your babies...
      thanks

      with love,
      Burcu


    • wendyhughes@btconnect.com
      Dear Burcu, I feel a bit of a dinosaur now because it was so long ago and I m sure other parents have some good modern advice. But what you are saying is
      Message 2 of 9 , Jul 12, 2007

        Dear Burcu,

      • Elizabeth Peil
        Dear Burcu, At 11 1/2 months old Chaz had a g-tube placed which helped with the several pnemonias he had in his first year due to his poor swollow and
        Message 3 of 9 , Jul 12, 2007
          Dear Burcu,
          At 11 1/2 months old Chaz had a g-tube placed which helped with the several pnemonias he had in his first year due to his poor swollow and aspiration into his lungs.  At the time that he had the g-tube placed they looked and said that he was not refluxing, but after they put the g-tube in he started to reflux.  I guess maybe due to the change in his anatomy his food was going directly into his tummy and he was actually getting it all, not going into his lungs.  He was throwing up all of his feeds all the time.  We were worried with him throwing up so much that it would then go back down into his lungs and cause even more problems.  So 4 months after he had his g-tube surgery we decided  to put him back under and have a nysin done.  He doesnt bring any thing up now, but sometimes you can see when he has his feeds that he is still refluxing, maybe it is just the feeling in his tummy or whatever, but he will drool like his is going to vomit.  I am not sure if any of this helps you or not.  But a g-tube and nysin worked for him.  Oh by the way he takes nothing by mouth any more.  He had a video flouroscopy done and they said he was aspirating anything thinner then honey.  So he will taste things, but will not swallow them.  That is all on his own.  I think he has had such bad experience with the whole eating thing that he is done with it.  Our hope is that one day when he is a bit older and hopefully stronger that he will take some things by mouth.  Even if we have to thicken them.  I hope any of this helped you.  Best wishes to you and your family.  I hope Ilker gets over his pnemonia quickly and all goes well with what ever it is that you decide to do for his feedings.
           
          All the best,
           
          Liz


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        • Shannon
          Javad had a g-tube (Mik-ey) placed when he was very young, but at that time we did not get a nissen. He was very sick for most of the first three years and we
          Message 4 of 9 , Jul 12, 2007
            Javad had a g-tube (Mik-ey) placed when he was very young, but at that
            time we did not get a nissen. He was very sick for most of the first
            three years and we found out that he had been refluxing and causing
            the pneumonias. We had the nissen done and that has been very helpful.
            We also have him on a specialized food (Pepdite) which helped when he
            was younger. We may change this as time goes on, but found he had a
            very sensitive stomach.

            Hope that is helpful!

            Shannon
          • Spampinato, Rosemary
            G tube feeding. Keep him alive. Worry about the food later. He has to work on clearing his own secretions. ________________________________ From:
            Message 5 of 9 , Jul 13, 2007
              G tube feeding. Keep him alive. Worry about the food later. He has to work on clearing his own secretions.

              From: Myotubular_Myopathy@yahoogroups.com [mailto:Myotubular_Myopathy@yahoogroups.com] On Behalf Of burcu
              Sent: Thursday, July 12, 2007 10:24 AM
              To: Myotubular_Myopathy@yahoogroups.com
              Subject: [Myotubular_Myopathy] need advice on refluxing baby

              Dear family,
              I need your advices on how I should feed my son and prevent foreign
              substances like food to go into his lungs? At the moment he is
              beeing fed by a tube that delivers the food from his mouth to his
              stomach...

              Ilker will be 4 months old in a week. He has been diagnosed as X-
              linked MTM patient 2 months ago and is suffering from pneumonia at
              the moment...
              very recently he've had bronchoscopy that showed us large amounts of
              mucus due to inflamed and swollen bronchi...he has very thick
              secretions that lowers sat.lvls around 60s sometimes
              AND in addition to that refluxing is not helping at all!
              we will see a gastroenterologist next week if we get a positive
              result out of the nebul and PT treatments this week...
              so before we go I would be glad to hear the ideas that worked for
              your babies...
              thanks

              with love,
              Burcu

            • burcu paltura
              Dear Friends thank you all for your advices. Although most of the terms you ve mentioned in your messages are so unfamiliar to me -just for now- I read them
              Message 6 of 9 , Jul 14, 2007
                Dear Friends thank you all for your advices.
                Although most of the terms you've mentioned in your messages are so unfamiliar to me -just for now- I read them all and take some notes so that when I go to see a gastroenterologist I will discuss them all and try to find the way that is best for Ilker.

                But unfortunately this won't be anytime soon because Ilker is getting worse. Bronchoscopy didn't work well for him- he was recovering before that!...I don't know maybe he had an infection at the hospital again...sometimes its better to stay at home to protect these little vulnarable bodies...
                Yesterday I couldn't believe it when I heard him coughing...I tought it is someting good for him and finally he is clearing up his secretions...but that turned out to be my biggest nightmare, I had to suction him like in every 2-5 minutes till this morning...after the operation he had fever and yesterday his pulse increased to 200s and saturation dropped below 60s...he is a bit better today with new IV antibiotics and 1 litre of oxgyen support 24/7...I am resisting to take him to the hospital I hope I don't have to...

                thanks again for sharing your experiences...hope to hear from you soon and always with good news!
                All the best,
                Burcu 

                burcu <bpaltura@...> wrote:
                Dear family,
                I need your advices on how I should feed my son and prevent foreign
                substances like food to go into his lungs? At the moment he is
                beeing fed by a tube that delivers the food from his mouth to his
                stomach...

                Ilker will be 4 months old in a week. He has been diagnosed as X-
                linked MTM patient 2 months ago and is suffering from pneumonia at
                the moment...
                very recently he've had bronchoscopy that showed us large amounts of
                mucus due to inflamed and swollen bronchi...he has very thick
                secretions that lowers sat.lvls around 60s sometimes
                AND in addition to that refluxing is not helping at all!
                we will see a gastroenterologist next week if we get a positive
                result out of the nebul and PT treatments this week...
                so before we go I would be glad to hear the ideas that worked for
                your babies...
                thanks

                with love,
                Burcu



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              • Sheallyn
                I have yet to read the other parents responses so I may be repeating some advice here but I know with my little guy Kaden, we had a full fundoplication done on
                Message 7 of 9 , Jul 18, 2007
                  I have yet to read the other parents responses so I may be repeating
                  some advice here but I know with my little guy Kaden, we had a full
                  fundoplication done on him when he was about a month old. Until that
                  point he was fed through an NG tube (down his nose to his tummy) Now
                  he has a little port in his tummy called a G-Tube and I am convinced
                  that having this operation has definetly extended his life due to
                  possible aspiration (ie: food etc getting into his lungs)

                  Basically the way this works is that the stomach is tied off at the
                  top so that anything that comes up sp to speak cannot, instead it
                  comes out the bottom and there is no doubt that it lessens the risk of
                  choking and other potential hazards. Kaden is X Linked as well ..


                  hope this helps!
                • Sheallyn
                  I know what your saying about the hospital and the risk of being there. We all know that is where the sick people are ... and I am no doctor but if you are
                  Message 8 of 9 , Jul 18, 2007
                    I know what your saying about the hospital and the risk of being
                    there. We all know that is where the sick people are ... and I am no
                    doctor but if you are having to suction him every 2-5 minutes a trip
                    to emergency is not a bad idea. The funny thing about suctioning is
                    that the more you have to do it, the more you stir it up ... Kind of a
                    catch 22 that way ... We cannot leave the secretions in there due to
                    critical airways but over suctioning again, can make it worse. I
                    personally feel it would be in your best interest to take him in and
                    maybe get his lungs X-rayed to make sure nothing serious is going on
                    there ... ie: infection, collapsed lungs etc.


                    Please do not think that I am disrespecting your choices as YOU are
                    his mother, but Kaden has been through the exact same thing many times
                    and our Doc's advice has always been to go in, better safe than sorry!


                    Please take care of both of you, we'll be thinking of you!


                    Sheallyn & Kaden
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