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Thread: Feeding tube advice

  1. #1

    Feeding tube advice

    My son is 19 months old and weighs 20 lbs 9 oz. He is really picky about what he eats and is already on the high calorie boost milk. His cystic fibrosis doctor is recommending a g-tube, does anyone have any advice or have been in a similar situation?

  2. #2
    I dont have any advice for dealing with a g-tube in such a young one. But I do know that nutritional status is well correlated to long-term pulmonary well-being, so if there is any question that your son is not getting the nutrition he needs, I would do it.
    DDf508, 46 years old, 2 daughters (ages 16 and 12), PA, SA, Aspergillus, Achromabacter, GERD, CFRD, Asthma, Married 20+ years, FEV1 20% or lower, FVC 52%, listed at Duke with 1 dry run under belt.

  3. #3
    Junior Member
    Join Date
    Jul 2007
    Posts
    18
    What's your son's BMI?

  4. #4
    The doctor has never mentioned BMI.

  5. #5
    They do tell me that the more weight he has on the better his lung development is.

  6. #6
    Junior Member
    Join Date
    Oct 2016
    Posts
    28
    My daughter was 18 months old when her CF doctor suggested a feeding tube. I was reluctant at first, and cried a lot about it to be honest. Eventually he talked me into it. She was tiny...he said she would not even come close to her potential adult size if we kept going the way we were. She also had HORRID pains/gas/malabsorption and was put into the hospital for an obstruction. She cried a lot, and it was an awful time. At about 21 months of age we went ahead and did the G-tube surgery along with the Nissen Fundoplication. It was hard at first adjusting to the gtube--but it was definitely 100% without a doubt the correct decision. For the first time in her life I could put her down to play! She was so much happier after her recovery. My daughter is sixteen now (yikes!) and her gtube is still her best friend. Everyone has a different experience, but for us it was a Godsend. Let me know if you have any specific questions. She is about 124 pounds and 5'2". Her BMI is perfect, and I'm glad we didn't wait any longer to do the procedure.
    Mommy hugs !
    Michelle

  7. #7
    Did you ever have any problems with your daughter trying to play with her g-tube?

  8. #8
    I got a g-tube when I was 8. My parents resisted for a long time, but after I got the tube I gained a lot of weight, meals were no longer epic battles, and I had more energy and felt better. My life is better because of it.

    I haven't had any major issues, and I've used a g-tube over 20 years now. I used it all the time growing up and off and on during my adult years. It's been really helpful.

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