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Re: [Arthrogryposis Support Group] Re: Feeding

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  • sonya king
    Hello and thanks for the reply. We have a special bottle for Bailey that is called a haberman and it has an extra long nipple and flow control, when she wants
    Message 1 of 3 , Nov 1, 2004
      Hello and thanks for the reply. We have a special bottle for Bailey that is called a haberman and it has an extra long nipple and flow control, when she wants she does alright with it. She gets 7 ounces at a feeding..........but only takes 1 to 3 by mouth, depending on the mood she is in. I have already started her on baby food and she does ok with it (again.......when she wants to lol). We have tried everything to increase her nippling and so far nothing. And yes, she does have a safe swallow.
      She is on an easily digested formula....nutramigen. She had to be switched from neo sure..........it was so jammed packed with proteins and things her stomach couldn't handle it and it gave her all kinds of gas!!! And because of the fundo, she cannot burp or throw up. Nutramigen has been a life saver.

      So, your daughter has amc? Is it a severe or mild case? Does she have swallowing issues? I would love to hear back from you. and again thanks for your email.


      cricket_lighter <jnjakubos@...> wrote:

      Just wanted to let you know that my dd Bekah has a g-tube and has
      since she was 6 days old. She is starting to take blended foods by
      tube and loving being able to have some of what the family is
      having. She is now 6yrs. and doing so well that her formula intake
      has been reduced. I can't answer any question on oral eating for
      her. Does she have a safe swallow? Maybe a bottle that you can
      control the amt. pushed out to allow her to get more in at each
      sitting. Is she also on an increased calorie formula too. That
      really saved us on the volume.

      You might want to ask the dr.'s about a predigested formula to ease
      the tummy's work load.

      Good luck cricket and Bekah

      --- In arthrogryposissupportgroup@yahoogroups.com, "sonya"
      <goody2shoes19774@y...> wrote:
      > Hello all. I haven't posted in a while, with all the doctors
      > appointments and things I just haven't had time. I posted when my
      > daughter was born, July 9th, and told about the surgeries and
      > she was going through. She's had a rough time, but we're getting
      > through it. She had her achilles tendon clipped on the 15th, and
      > in casts for 3 more weeks, then after that it is little "afo's" or
      > splints for her legs.
      > We had a muscle biopsy done on her and the results came in
      > yesterday....nothing. They cannot link it to any specific muscle
      > disease. She has a form of amc, her feet and wrists are
      > She also has a feeding tube, because she just does not have the
      > endurance to eat what she's suppose to eat.
      > I was wondering if anyone elses child has had a gastrostomy and if
      > anyone has any tips on how to get my daughter to eat from a
      > better?? Any tips, we would really appreciate it.
      > Thanks
      > Sonya & Mike

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      Sonya Johnson

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