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6344Re: [Myotubular_Myopathy] sickness after feeding

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  • Diana Manny
    Sep 3 2:43 PM
      Jennie,

      Luke has severe reflux....has had a fundo and had issues still.  We take pepcid several times a day.  Also try pregestimil formula.  It was the magic formula for us.  Good Luck! 

      --- On Wed, 9/3/08, jenn332 <jenniejenkins@...> wrote:
      From: jenn332 <jenniejenkins@...>
      Subject: [Myotubular_Myopathy] sickness after feeding
      To: Myotubular_Myopathy@yahoogroups.com
      Date: Wednesday, September 3, 2008, 7:40 PM

      Hi everyone,
      I'm sure you've seen many similar questions to this one before but
      here goes! Nathaniel never experienced sickness or reflux in his 1st
      few months of life and then he came down with norovirus about 2 months
      ago in hospital. Since then he has been sick at least once every day.
      3 weeks ago he had a g-tube fitted and a fundoplication at the same
      time but he is still being sick. The dietician at hospital has changed
      his feed several times - infatrini, sma high energy, nutramagen, all
      in differing strengths. He is due to start on neocate tomorrow but I
      wanted to post this in time to get replies in case this also doesn't
      work. I'm very keen for this to be sorted as they are hoping to try
      and take the trachy out and replace with NIV in a few weeks (this has
      been tried before and failed due to aspiration). Nathaniel is 5 months
      now.
      Thanks!

      Jennie


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