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RE: [Myotubular_Myopathy] Re: formula issues

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  • Anne McAuliffe
    These people are so appalling aren t they? If something doesn t conform to their beliefs they seem to try to take revenge on us parents by being utterly
    Message 1 of 9 , Jun 13, 2006
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      These people are so appalling aren't they? If something doesn't conform to
      their beliefs they seem to try to take 'revenge' on us parents by being
      utterly obnoxious and insulting, with comments that on the face of it you
      can't take umbrage at. It seems to be universal and it makes my blood boil.
      Hang in there girl. Some of the other parents have used that unusual route
      of 'food' so I'm sure you'll get hints. We were about to until the Neocate
      worked.
      Sending you many many positive vibes
      Anne
      xxx

      -----Original Message-----
      From: Myotubular_Myopathy@yahoogroups.com
      [mailto:Myotubular_Myopathy@yahoogroups.com] On Behalf Of Kimberly Kowalski
      Sent: 13 June 2006 02:41
      To: Myotubular_Myopathy@yahoogroups.com
      Subject: Re: [Myotubular_Myopathy] Re: formula issues

      thank you everyone for all of your valuable input.
      things are still pretty much the same...well, sort of.
      it seems me and sam's current nutritionist are like
      oil and vinegar. she flat out told me this morning
      that if he doesn't tolerate neocate the only other
      option she has is IV nutrition...! i'm speechless. i
      didn't want to point out to her that there is also
      food, her being a nutritionist, i thought that would
      be too obvious but i keep learning new things along
      the way here. i am confidant we will work this out --
      especially with all the similar stories from everyone
      here. sometimes i need to laugh because you simply
      cannot make this stuff up!

      k

      shannon- no sweat about the mail...i'll be here :)

      --- Shannon <smashintwo66@...> wrote:

      > Hi Kim,
      >
      > The feeding issue is a frustrating one. We had
      > similar issues with
      > Javad. After trying a variety of formulas (when we
      > were transitioning
      > him from breast milk), we finally landed on on
      > Pepdite 1+. It is
      > great. Javad tolerated it from the beginning. It is
      > one that is not
      > that well known, but it has been a lifesaver. We
      > make it at 3/4
      > strength which helps. Don't give up. Keep insisting.
      > Obviously this is
      > an issue with the boys! Once we put Javad on this
      > formula, we haven't
      > had any problems. He tolerates it great, has grown!
      > He gets 150cc 4x a
      > day and 59cc per hour at night for 8 - 10 hours.
      >
      > I haven't mailed things yet. I really am being
      > flaky, but will do it
      > by next weekend. School is out for me on firday and
      > then I will be
      > free, free, free....(ok, maybe not that free! :)
      >
      > Shannon
      >
      >
      >
      >
      >


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    • kristin.burlage@comcast.net
      Hi Kim, My son Justin is on Neocate 1+. After breast milk we did regular formula then Pediasure and then Peptamen Jr and he began wretching alot. I too
      Message 2 of 9 , Jun 21, 2006
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        Hi Kim,
        My son Justin is on Neocate 1+.  After breast milk we did regular formula then Pediasure and then Peptamen Jr and he began wretching alot.   I too think it was sitting in his gut a lot longer.  We elevating his head during his night feeding to help the digestion.  We had him on a wedge and also elevated the crib feet.  He also wears a TLSO due to his scoliosis that seems to help.  I noticed that when he wasn't wearing it he would wretch more.  Also if Justin is on his left side when he is sleeping he seems to have more problems digesting. If he is on his back of his right side the food seems to digest faster. 
        Now that he is on the Neocate his episodes have decreased but they still occur, it does make him constipated so we give him 10cc prune juice 2 x's a day, we also give him 1 tbsp of yogurt 2x's a day.  It seems to keep him more regular and less wretchy.
        Our nutritionist mentioned a drug Relafen which is supposed to help with digestion- we haven't tried it yet we are saving it as a last resort.
        I don't know if it affects his saturation he desats only at night if he is not wearing his BiPap.
        Hope this helps,
        Kristin
         
        -------------- Original message --------------
        From: "kim" <kimmyk47@...>

        hey everyone,

        we have been in the process of transitioning sammy from breastmilk
        to formula. i had a feeling before we started that this would be
        difficult and it has proved to be nothing but...what a mess. he has
        had a tough time tolerating it so far. we started on regular enfamil
        lipil, went on to nutramigen and now are on neocate infant. each
        time the same thing is happening, just as i think anne described
        with tom: constant desating when sleeping and sitting much lower
        than normal....desating like every 10 minutes. i think it's just as
        anne described: he is not digesting it well, it's sitting in his
        belly and putting pressure on his diaphram and making it harder to
        take a deep breath. he is pooping, but only a couple times a day
        and we are only at 1/4 formula 3/4 breastmilk. this is supposed to
        be a very easily digested formula and i am worried because it
        doesnt seem to be working for him and dont know if there are o ther
        options? i wanted to start him off with this one but the nutrionist
        was against that (first mistake) i didnt want to find my frozen
        breast milk supply almost gone and have him not established with a
        formula....well, here we are! i have very little breast milk left
        and am supposed to switch sam to 1/2 formula 1/2 breastmilk today.

        does anyone have any suggestions? i am at the end of the rope here.
        last week when i had to push to have him switched to neocate the
        nutritionist (who works in the pulmonary dept) said she never heard
        of this kind of reaction to formula before and totally didnt believe
        me. she called me up in a panic stating that this was and emergency
        and i needed to bring him to the hosp. immediately! sometimes the
        lack of help and difficulty i run into just makes me stand still
        with my mouth hanging open (inevitabley after i've said somethings i
        may later regret!).

        any help would be SO appreciated.< BR>
        hope everyone is enjoying the summer!

        k

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