Feeding tubes

[CJPsMom]

I know lots of you have been here...Collin is almost 6 months old and still just under 13 pounds.  Nutritionist was very enthusiastic about getting a tube as Collin doesn't eat regularly in the volume that he needs for bounceback weight.  Doctor (not my favorite of our clinic) was much more ho-hum about it and said we should wait and see, as he does generally gain (except when he's sick).
I'm torn, as so many of you here seem to be of the mindset that you wish you had done it sooner, but he's so little, and already had 2 abdominal surgeries.
I'd love to hear thoughts on the tubes, experiences, particularly if any of you have very little ones on it.
Oh the challenges of being a CF parent!

 

[CJPsMom]

I know lots of you have been here...Collin is almost 6 months old and still just under 13 pounds. Nutritionist was very enthusiastic about getting a tube as Collin doesn't eat regularly in the volume that he needs for bounceback weight. Doctor (not my favorite of our clinic) was much more ho-hum about it and said we should wait and see, as he does generally gain (except when he's sick).
I'm torn, as so many of you here seem to be of the mindset that you wish you had done it sooner, but he's so little, and already had 2 abdominal surgeries.
I'd love to hear thoughts on the tubes, experiences, particularly if any of you have very little ones on it.
Oh the challenges of being a CF parent!

 

[CJPsMom]

<p>I know lots of you have been here...Collin is almost 6 months old and still just under 13 pounds. Nutritionist was very enthusiastic about getting a tube as Collin doesn't eat regularly in the volume that he needs for bounceback weight. Doctor (not my favorite of our clinic) was much more ho-hum about it and said we should wait and see, as he does generally gain (except when he's sick).
<p>I'm torn, as so many of you here seem to be of the mindset that you wish you had done it sooner, but he's so little, and already had 2 abdominal surgeries.
<p>I'd love to hear thoughts on the tubes, experiences, particularly if any of you have very little ones on it.
<p>Oh the challenges of being a CF parent!

 

[meteoras69]

Hello,
I am sorry you are facing this situation.  We went through a similar time with our son, Aidan, now 23 months.  I would encourage you to get at least two opinions (from accredited CF centers) before making a decision.  From about the time Aidan was 6 months old to around 14 months old, we were told over and over that he was not gaining the weight he should, that he needed a feeding tube, .......he was at about the 25% percentile weight for height during that time.  After getting an opinion at another CF center, we made a few adjustments to his diet/feeding and he quickly reached the 50% percentile weight for height.  Almost one year later, he is at 60% weight for height and has maintained a steady gain.....Of course, it's possible to try everything and your child will still not gain the weight, and of course, then a feeding tube may be the solution.  However, at six months of age and just under 13 lbs, your child might not be at that point yet.  Just my opinion.....Best wishes to you and your family.
 

 

[meteoras69]

Hello,
I am sorry you are facing this situation. We went through a similar time with our son, Aidan, now 23 months. I would encourage you to get at least two opinions (from accredited CF centers) before making a decision. From about the time Aidan was 6 months old to around 14 months old, we were told over and over that he was not gaining the weight he should, that he needed a feeding tube, .......he was at about the 25% percentile weight for height during that time. After getting an opinion at another CF center, we made a few adjustments to his diet/feeding and he quickly reached the 50% percentile weight for height. Almost one year later, he is at 60% weight for height and has maintained a steady gain.....Of course, it's possible to try everything and your child will still not gain the weight, and of course, then a feeding tube may be the solution. However, at six months of age and just under 13 lbs, your child might not be at that point yet. Just my opinion.....Best wishes to you and your family.

 

[meteoras69]

<p>Hello,
<p>I am sorry you are facing this situation. We went through a similar time with our son, Aidan, now 23 months. I would encourage you to get at least two opinions (from accredited CF centers) before making a decision. From about the time Aidan was 6 months old to around 14 months old, we were told over and over that he was not gaining the weight he should, that he needed a feeding tube, .......he was at about the 25% percentile weight for height during that time. After getting an opinion at another CF center, we made a few adjustments to his diet/feeding and he quickly reached the 50% percentile weight for height. Almost one year later, he is at 60% weight for height and has maintained a steady gain.....Of course, it's possible to try everything and your child will still not gain the weight, and of course, then a feeding tube may be the solution. However, at six months of age and just under 13 lbs, your child might not be at that point yet. Just my opinion.....Best wishes to you and your family.
<p>