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Re: liver?

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  • patrickmbowers
    Hi Corey, I don t know if your on Face Book or not but this was brought up on the FB MTM Disscussion group not to long ago regarding liver issues, itching,
    Message 1 of 5 , May 16 10:46 AM
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      Hi Corey, I don't know if your on Face Book or not but this was brought up on the FB MTM Disscussion group not to long ago regarding liver issues, itching, higher enzymes,bile acids/salts, and even blood issues. In our son's case we eventualy found that his liver was not functioning porperly and that it was spilling bile salts/acids into his blood causing the itching. FYI he was G-Tube fed. We too had tryed many different ways to get rid of the itching including westcort cream, atarax, and even some home remedies before we eventually changed his formula to a amino acid based formula that was already broken down. He did not have to work to break down proteins with this formula which was "Elacare." This did work for him the rest of his life and we do know of families that have made their own food and have had the same results. We were warned not to do a liver biopsy due to the fact that some other boys who had liver issues did have a liver biopsy done and it caused them to bleed to death. Our son had normal bleeding times, but he did have bleeding issues on occassion and this has been found in other MTM boys too. Check out some of the other family stories on The Information Point at centronuclear.org.uk or MTM Resource Group at wwww.mtmrg.org or links from www.joshuafrase.org. Good Luck with this, The Bowers Family from OLd Lyme, CT

      --- In Myotubular_Myopathy@yahoogroups.com, Corey Leibowitz <cleibo1@...> wrote:
      >
      > My son had liver issues, jaundice, itching and elevated billy rubin. He had it when he was 4 and he had it again when he was 8. We've had numerous testing done and there is no explanation. He had to be on medicine the itching was so bad. We are still on a "search" for an answer and we are watching him for signs of itching, We are assuming since this has occured twice it will happen again.
      >
      >
      > Corey Leibowitz
      >
    • Debbie Maughan
      Hello Bower Family, I have a question regarding the Elacare. Does it provide enough protein for the diet or do you have to add something to it?? I have mention
      Message 2 of 5 , May 17 5:29 PM
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        Hello Bower Family, I have a question regarding the Elacare. Does it provide enough protein for the diet or do you have to add something to it?? I have mention this to Kash's dietician and she is willing to let him try it but concerned about not getting enough protein out of it if its already broke down. Any info you can give me before he sees her tomorrow would be much appreciated. Kash itches constantly!!!! all day and even in his sleep!!!
        Thanks so much
         
        Debbie


        From: patrickmbowers <pmbowers@...>
        To: Myotubular_Myopathy@yahoogroups.com
        Sent: Sun, May 16, 2010 11:46:56 AM
        Subject: [Myotubular_Myopathy] Re: liver?

         



        Hi Corey, I don't know if your on Face Book or not but this was brought up on the FB MTM Disscussion group not to long ago regarding liver issues, itching, higher enzymes,bile acids/salts, and even blood issues. In our son's case we eventualy found that his liver was not functioning porperly and that it was spilling bile salts/acids into his blood causing the itching. FYI he was G-Tube fed. We too had tryed many different ways to get rid of the itching including westcort cream, atarax, and even some home remedies before we eventually changed his formula to a amino acid based formula that was already broken down. He did not have to work to break down proteins with this formula which was "Elacare." This did work for him the rest of his life and we do know of families that have made their own food and have had the same results. We were warned not to do a liver biopsy due to the fact that some other boys who had liver issues did have a liver biopsy done and it caused them to bleed to death. Our son had normal bleeding times, but he did have bleeding issues on occassion and this has been found in other MTM boys too. Check out some of the other family stories on The Information Point at centronuclear.org.uk or MTM Resource Group at wwww.mtmrg.org or links from www.joshuafrase.org. Good Luck with this, The Bowers Family from OLd Lyme, CT

        --- In Myotubular_Myopathy@yahoogroups.com, Corey Leibowitz <cleibo1@...> wrote:
        >
        > My son had liver issues, jaundice, itching and elevated billy rubin. He had it when he was 4 and he had it again when he was 8. We've had numerous testing done and there is no explanation. He had to be on medicine the itching was so bad. We are still on a "search" for an answer and we are watching him for signs of itching, We are assuming since this has occured twice it will happen again.
        >
        >
        > Corey Leibowitz
        >


      • patrickmbowers
        Hi Debbie, Elacare is actually an amino acid based formula which means the Proteins are already broken down. Protein is still present but it means the liver
        Message 3 of 5 , May 18 6:05 AM
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          Hi Debbie,

          Elacare is actually an amino acid based formula which means the Proteins are already broken down. Protein is still present but it means the liver did not have to process it the same way. We did give fat soluable (sorry for the spelling on that) vitamins, with A, D, E, and K but no protein supplements needed....for Patrick with that formula. I should clarify that we did this change with a G.I. Dr. on board and after tests done on blood showed high levels of bile acids (bile salts) in his blood and urine which is what actually caused Patrick's itching.

          Good Luck Debbie and our best to you all, with a big hug from all of us to Kash.

          Patrick Bowers

          --- In Myotubular_Myopathy@yahoogroups.com, Debbie Maughan <debbiemaughan@...> wrote:
          >
          > Hello Bower Family, I have a question regarding the Elacare. Does it provide enough protein for the diet or do you have to add something to it?? I have mention this to Kash's dietician and she is willing to let him try it but concerned about not getting enough protein out of it if its already broke down. Any info you can give me before he sees her tomorrow would be much appreciated. Kash itches constantly!!!! all day and even in his sleep!!!
          > Thanks so much
          >
          > Debbie
          >
          >
          >
          >
          > ________________________________
          > From: patrickmbowers <pmbowers@...>
          > To: Myotubular_Myopathy@yahoogroups.com
          > Sent: Sun, May 16, 2010 11:46:56 AM
          > Subject: [Myotubular_Myopathy] Re: liver?
          >
          >  
          >
          >
          > Hi Corey, I don't know if your on Face Book or not but this was brought up on the FB MTM Disscussion group not to long ago regarding liver issues, itching, higher enzymes,bile acids/salts, and even blood issues. In our son's case we eventualy found that his liver was not functioning porperly and that it was spilling bile salts/acids into his blood causing the itching. FYI he was G-Tube fed. We too had tryed many different ways to get rid of the itching including westcort cream, atarax, and even some home remedies before we eventually changed his formula to a amino acid based formula that was already broken down. He did not have to work to break down proteins with this formula which was "Elacare." This did work for him the rest of his life and we do know of families that have made their own food and have had the same results. We were warned not to do a liver biopsy due to the fact that some other boys who had liver issues did have a liver biopsy done and
          > it caused them to bleed to death. Our son had normal bleeding times, but he did have bleeding issues on occassion and this has been found in other MTM boys too. Check out some of the other family stories on The Information Point at centronuclear.org.uk or MTM Resource Group at wwww.mtmrg.org or links from www.joshuafrase.org. Good Luck with this, The Bowers Family from OLd Lyme, CT
          >
          > --- In Myotubular_Myopathy@yahoogroups.com, Corey Leibowitz <cleibo1@> wrote:
          > >
          > > My son had liver issues, jaundice, itching and elevated billy rubin. He had it when he was 4 and he had it again when he was 8. We've had numerous testing done and there is no explanation. He had to be on medicine the itching was so bad. We are still on a "search" for an answer and we are watching him for signs of itching, We are assuming since this has occured twice it will happen again.
          > >
          > >
          > > Corey Leibowitz
          > >
          >
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