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6347Re: [Myotubular_Myopathy] sickness after feeding

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  • Sally Eubanks
    Sep 4, 2008
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      Jennie--

      Oscar was on infantrini, too. Until he was about 8 months old he needed regular, small meals. In fact, at first (2-4 months old) he needed continuous feeds with a four hour break every day. But he gradually took to the food and they were able to give him mealtimes, although we still have to run his food (now Nutrini) over an hour-long period.

      Hope you get some good advice!!
      Sally


      --- 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, 9:40 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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