Reply to Hoping for a g-tube

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[quote=Anonymous][quote=Anonymous]Thank you for your replies. It is nice to know that I am not alone in having these issues. To be exact, he's 19lb and 11oz. I realize that there are smaller children, and that he is not on the brink of death, but the point is that he does not receive the nutrition that he needs for optimal growth. I do appreciate knowing the difficulties or problems and plan to look through the site that was linked. Could you share the name of the doctor at Georgetown? What is the set-up there. Like any mother, I want what is best and would like to know about the different options out there. To the poster who had a very negative experience with the tube, how is your child with eating now? To the moms with older ones, have they grown out of it to some extent? Will they eat lunch at school? [/quote]

I am the mom who had the negative experience with the tube.  Unfortunately, through my own hardship with trying to wean my child off the tube, I found many other parents with similar difficulties.  They, too, had children who either had kids who had some underlining problems that eventually resolved, or had children who for one reason or another never wanted to eat.  For us, the tube became a nemesis, as we saw how our children went from difficult eaters to virtually no eating at all.  Nothing really worked for me.  We went through multiple therapists, GI doctors, neurologists, KKI, Children's, Georgetown.... all futile efforts.  No one wanted to remove my son off the tube because he forgot how to eat and be hungry.

We came up with our own weaning plan, and monitored my son very closely for the next few months.  He was taking very little but enough to stay hydrated.  He had lost some weight, but then the lost eventually plateau out.   It wasn't until 6 months later until we noticed any kind of weight increase.  We had to re-teach him what hunger felt like and what chewing/eating were, as we truly believed that he became so dependent on the tube that he lost all impetus to eat/drink.

I took some time off of work, and did extensive research on ways to stimulate the oral muscles.  My motivation was to never see the feeding tube again, and that kept me sane and patient through the hard times.  Fast forward two years and my son is now thriving.  He grew from 1% to 35% in weight.  He does not have a large selection of food that he eats, but whatever he is comfortable with he can chow it down.

Before you choose the feeding tube, please make sure you have exhausted everything else, and be sure to have a weaning plan in place for the tube..  
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