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RE: [Myotubular_Myopathy] Digestion and Reflux

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  • Jessica Juckers
    Hi There, Jack was on a drug to aid digesting for a little while (1-2 months), he grew out of it., he did relfux as soon as they extubated him. He was
    Message 1 of 9 , Dec 4, 2003
      Message

      Hi There,

       

      Jack was on a drug to aid digesting for a little while (1-2 months), he grew out of it., he did relfux as soon as they extubated him. He was continually feed for 4 moths when he got a nissens fundo and G-tube.

      He might reflux every now and then, he gets fed 3 hourly to stop this, I also found out before that Jacks gets way more Volume if formula then some other boys.

       

      Jack is going to kept at the same weight for a while, he is very plump for his age and it is affecting his movement and time off the vent – unlike a few months ago when he was lighter.

       

      Hope this helps!

       

      Jessica

       

       

      -----Original Message-----
      From: Wright, Janice (J) [mailto:janice.wright@...]
      Sent: Thursday, 4 December 2003 7:27 PM
      To: Myotubular_Myopathy@yahoogroups.com
      Subject: [Myotubular_Myopathy] Digestion and Reflux

       

      Hi,

       

      Matthew also received breast milk for 11 months.  FM 85 (a breast milk supplement) was added to the breast milk to thicken it and to provide extra kilojoules.  He always digested his feed but did have a problem with reflux. Gaviscon powder and Prepulsid were also added when the reflux was bad.  I think they have taken Prepusid off the market, but ask your niece to check with the doctor.

       

      When my other son (Nicholas) was born (without MTMX) everyone was so paranoid that they naso-gastrally fed him, and every 2 hours they would pull back on the syringe to see how much he had not digested, and throw this away.  It would infuriate me, as I had worked hard to express the milk.  He went from weighing 3.8 kgs to 3.1 kgs. This continued until he got fed up and pulled the tube out of his nose. With no means to check, he was left alone and he took to the breast and gained back all that weight. Sometimes in the NICU, we tend to over analyse!

       

      Hope all goes well.

      Janice



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    • Grooms4
      MessageJessica, Do you remember the drug that Jack was on to aid digesting? How old is Jack now? Thanks Marva ... From: Jessica Juckers To:
      Message 2 of 9 , Dec 8, 2003
        Message
        Jessica,
        Do you remember the drug that Jack was on to aid digesting? How old is Jack now?
         
        Thanks
        Marva
        ----- Original Message -----
        Sent: Thursday, December 04, 2003 5:59 AM
        Subject: RE: [Myotubular_Myopathy] Digestion and Reflux

        Hi There,

         

        Jack was on a drug to aid digesting for a little while (1-2 months), he grew out of it., he did relfux as soon as they extubated him. He was continually feed for 4 moths when he got a nissens fundo and G-tube.

        He might reflux every now and then, he gets fed 3 hourly to stop this, I also found out before that Jacks gets way more Volume if formula then some other boys.

         

        Jack is going to kept at the same weight for a while, he is very plump for his age and it is affecting his movement and time off the vent – unlike a few months ago when he was lighter.

         

        Hope this helps!

         

        Jessica

         

         

        -----Original Message-----
        From: Wright, Janice (J) [mailto:janice.wright@...]
        Sent: Thursday, 4 December 2003 7:27 PM
        To: Myotubular_Myopathy@yahoogroups.com
        Subject: [Myotubular_Myopathy] Digestion and Reflux

         

        Hi,

         

        Matthew also received breast milk for 11 months.  FM 85 (a breast milk supplement) was added to the breast milk to thicken it and to provide extra kilojoules.  He always digested his feed but did have a problem with reflux. Gaviscon powder and Prepulsid were also added when the reflux was bad.  I think they have taken Prepusid off the market, but ask your niece to check with the doctor.

         

        When my other son (Nicholas) was born (without MTMX) everyone was so paranoid that they naso-gastrally fed him, and every 2 hours they would pull back on the syringe to see how much he had not digested, and throw this away.  It would infuriate me, as I had worked hard to express the milk.  He went from weighing 3.8 kgs to 3.1 kgs. This continued until he got fed up and pulled the tube out of his nose. With no means to check, he was left alone and he took to the breast and gained back all that weight. Sometimes in the NICU, we tend to over analyse!

         

        Hope all goes well.

        Janice



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        Myotubular_Myopathy-unsubscribe@egroups.com



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        Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.
        ++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
                                                                  
        NOTICE: Please note that this eMail, and the contents thereof, 
        is subject to the standard Sasol eMail disclaimer which may be found at: 
        http://www.sasol.com/disclaimer                                                                                                          
        
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      • Shannon
        Hi Marva, Should have read the other messages before I responded. Javad was on breast milk that I pumped for 11 months. He also takes prilosec (which is
        Message 3 of 9 , Dec 10, 2003
          Hi Marva,

          Should have read the other messages before I responded. Javad was on
          breast milk that I pumped for 11 months. He also takes prilosec
          (which is compounded into a liquid) and Reglan to help with his
          reflux. Hope this helps!

          Shannon
        • connie guinn
          yes, Marva, Benjamin was also on expressed breast milk. In addition, he was placed on Reglan and Zantac to help with reflux. Godspeed. -Connie ...
          Message 4 of 9 , Dec 10, 2003
            yes, Marva, Benjamin was also on expressed breast
            milk. In addition, he was placed on Reglan and Zantac
            to help with reflux. Godspeed.
            -Connie
            --- Shannon <smashintwo66@...> wrote:
            > Hi Marva,
            >
            > Should have read the other messages before I
            > responded. Javad was on
            > breast milk that I pumped for 11 months. He also
            > takes prilosec
            > (which is compounded into a liquid) and Reglan to
            > help with his
            > reflux. Hope this helps!
            >
            > Shannon
            >
            >


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          • minyturtle
            Thanks for the speedy replies and the digestion. But what I am hearing I think is Reflux. In my nephews case his disgestion system is very slow and they are
            Message 5 of 9 , Dec 11, 2003
              Thanks for the speedy replies and the digestion. But what I am
              hearing I think is Reflux. In my nephews case his disgestion system
              is very slow and they are now to the point that they are not feeding
              him. Just wondering if anyone else has ran into this. His feeding
              tube came out and they are unable to get it back in. Finally
              yesterday the Doctor who heads the Local MDA looked at him and is
              going to review his condition. We need prayers that he will be able
              to help.



              --- In Myotubular_Myopathy@yahoogroups.com, connie guinn
              <kookla_g@y...> wrote:
              > yes, Marva, Benjamin was also on expressed breast
              > milk. In addition, he was placed on Reglan and Zantac
              > to help with reflux. Godspeed.
              > -Connie
              > --- Shannon <smashintwo66@y...> wrote:
              > > Hi Marva,
              > >
              > > Should have read the other messages before I
              > > responded. Javad was on
              > > breast milk that I pumped for 11 months. He also
              > > takes prilosec
              > > (which is compounded into a liquid) and Reglan to
              > > help with his
              > > reflux. Hope this helps!
              > >
              > > Shannon
              > >
              > >
              >
              >
              > __________________________________
              > Do you Yahoo!?
              > Free Pop-Up Blocker - Get it now
              > http://companion.yahoo.com/
            • Shannon
              Marva, When Javad was a newborn, he had a very sensitive digestive system. We used to joke that increasing things by 1cc an hour was so minor, but to Javad it
              Message 6 of 9 , Dec 11, 2003
                Marva,

                When Javad was a newborn, he had a very sensitive digestive
                system. We used to joke that increasing things by 1cc an hour
                was so minor, but to Javad it was very major. When he was a
                baby, the couln't move him for at least an hour after he ate
                because he would throw up risking aspiration. As we have all
                said, medications can help him digest his food more effectively.
                The g-tube is a great thing to get some nutrition in your nephew,
                no matter how small! I hope he is strong enough to get this
                procedure done. I hope that your niece thinks it is a good idea.
                Food in his young system will help him get stronger. My prayers
                continue to be with your niece, you , your nephew and the rest of
                your family.

                Peace,

                Shannon
              • Amanda
                Marva, I didn t read through all of the replies, so please excuse me if something is repeated. Have the doctors tried giving your great nephew Reglan? That
                Message 7 of 9 , Dec 11, 2003
                  Marva, I didn't read through all of the replies, so please excuse
                  me if something is repeated. Have the doctors tried giving your
                  great nephew Reglan? That is for slow motility. My son Jacob was
                  given breast milk for his first six months, then transitioned to
                  Enfamil. He is now on a blended diet with supplemental Pediasure.
                  He was on Zantac but is now on Pepcid. He has never had reflux per
                  se, but did/does (we aren't sure if he still does) have a hiatal
                  hernia, so the Pepcid helps prevent it from being irritated.

                  There are also baby formulas specially designed for slow motility.
                  They are called elemental formulas and unfortunately I can't think
                  of any specific names.

                  I hope all goes well with the MDA doctor (neurologist I assume).
                  Take care and send your niece love and support from us.

                  Amanda


                  --- In Myotubular_Myopathy@yahoogroups.com, "minyturtle"
                  <grooms4@c...> wrote:
                  >
                  > Thanks for the speedy replies and the digestion. But what I am
                  > hearing I think is Reflux. In my nephews case his disgestion
                  system
                  > is very slow and they are now to the point that they are not
                  feeding
                  > him. Just wondering if anyone else has ran into this. His feeding
                  > tube came out and they are unable to get it back in. Finally
                  > yesterday the Doctor who heads the Local MDA looked at him and is
                  > going to review his condition. We need prayers that he will be
                  able
                  > to help.
                  >
                  >
                  >
                  > --- In Myotubular_Myopathy@yahoogroups.com, connie guinn
                  > <kookla_g@y...> wrote:
                  > > yes, Marva, Benjamin was also on expressed breast
                  > > milk. In addition, he was placed on Reglan and Zantac
                  > > to help with reflux. Godspeed.
                  > > -Connie
                  > > --- Shannon <smashintwo66@y...> wrote:
                  > > > Hi Marva,
                  > > >
                  > > > Should have read the other messages before I
                  > > > responded. Javad was on
                  > > > breast milk that I pumped for 11 months. He also
                  > > > takes prilosec
                  > > > (which is compounded into a liquid) and Reglan to
                  > > > help with his
                  > > > reflux. Hope this helps!
                  > > >
                  > > > Shannon
                  > > >
                  > > >
                  > >
                  > >
                  > > __________________________________
                  > > Do you Yahoo!?
                  > > Free Pop-Up Blocker - Get it now
                  > > http://companion.yahoo.com/
                • Jessica Juckers
                  Hi Marva, Sorry I haven t replied, I have kept meaning to ask the docs what Jack was on for digestion and I keep forgetting, I am sorry. I do know that
                  Message 8 of 9 , Dec 12, 2003
                    Hi Marva,

                    Sorry I haven't replied, I have kept meaning to ask the docs what Jack
                    was on for digestion and I keep forgetting, I am sorry.
                    I do know that whatever it was - it was a drug that wasn't used
                    primarily for digestion - it was a drug that's side effect was speeding
                    up digestion.
                    Jack was slow at digestion, he was feed continuously on a pump. This was
                    for about 3-4 months.
                    I will ask tomorrow.

                    Take care,
                    Jessica
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