Monday, April 6, 2015

Calling all parents who have had kids with g-tubes...

Hi! It's Ana's mama, and I want to hear what folks think about g-tubes!
If you have any experience with a child with a g-tube, could you please chime in on the comments section?
 
What made you decide that a g-tube was necessary? Inability to eat? Erratic eating? Just not getting enough by mouth?

Does your child still eat by mouth at all?

How did you feel about tubes before you decided your child needed one? How do you feel now?

Do you use blender food? Formula? Combination?

Anything particularly difficult about care/maintenance?

Has your child been weaned off the tube/do you foresee this happening?



Ana is a great eater... When she wants to be. I really don't like the idea of sticking a tube in a child that CAN eat so well, but we live in a hot dry climate and on "I don't wanna drink" days I can spend hours slowly shoveling thickened liquids in... Where we live, dehydration can happen fast and it is imperative to keep the liquids going! Porgies now knows firsthand about the results of dehydration...
Anyway, miss Ana sees the GI on Thursday and I foresee this topic coming up! Therefore, I welcome your input.

If you want to comment privately, please mention such and I will not publish it.

Thanks!

9 comments:

  1. I taught special ed and many of my students had g-tubes. I had some students who took nothing by mouth and I had other students who ate, but not well enough to always be able to take what they needed. I always felt like they were a wonderful safetynet for the poor/inconsistent eaters. Refusing to swallow meds? G-tube! Struggling to drink enough on a warm day? G-tube! Has a sore throat and doesnt have the cognitive ability to understand that they really need to take liquids? G-tube! It always seemed like a g-tube could help keep things on an even keel when the kid hit a bump in the road. It bypassed the serious worry when a minor illness, constipation, or warm weather came into play. It toned down the concern to be more like what a parent would feel for a typical kid. It absolutely kept some of my students out of the hospital for what otherwise were minor problems.

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    1. Thanks! This really confirms what I was thinking about Ana...

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  2. What made you decide that a g-tube was necessary? Inability to eat? Erratic eating? Just not getting enough by mouth?

    Milena came home at 10 1/2 years old, no gag reflex left due to force feeding. She was severely malnourished and would pocket food in her cheeks then stress out when she swallowed it on accident, bring it back up, swallow it, bring it back up, etc. We opted for a gtube to stop the behavioral habit of pocketing and bringing food back up and to increase calories. She took no liquid by mouth either, so all liquid she was getting came through food.

    Does your child still eat by mouth at all? Yes and no. She does now but we were instructed to stop for 3 months following her gtube surgery to try to lose the behaviors that went with eating. Once we reintroduced a lot of that stubborness and refusal was gone, she no longer pockets food nor does she ruminate it back up, I can only assume that she realizes there is no need because her belly is always full now.

    How did you feel about tubes before you decided your child needed one? How do you feel now?

    I felt like a lot of people did it for convenience and not wanting to fight feeding issues and I do still feel that way, I think gtubes are majorly overused but I think when trauma is involved the best thing you can do is sometimes eliminate that power struggle and I don't regret our decision to have a gtube placed immediately once home at all.

    Do you use blender food? Formula? Combination? She gets blended puree by mouth and formula (Pediasure 1.5cal) by tube. If she continued to be strictly tube fed I would have considered a blended tube fed diet but because the goal was always to get back to oral feeds, we didn't feel it was a huge deal to use formula exclusively for 3 short months.

    Anything particularly difficult about care/maintenance? Difficult? Not the word I would use. Gross? Sometimes. It took a LONG time for the site to heal and was very oozy and smelled a bit. It had to be cauterized due to calcification a couple times but that's not a huge deal. The best purchase made was bamboo pads for absobancy.

    Has your child been weaned off the tube/do you foresee this happening?

    We have to go 12 solid months without use of the tube before her team will consider removal and we still use it daily just to vent her belly since she gulps air excessively. She is completely weaned from depending on it for nutritional use.

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  3. Thanks so much for your thorough answers!
    Ana really doesn't have feeding/digestive "problems"... As far as I can tell, it is simply a matter of desire and sometimes she just doesn't want to.

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  4. I've not had to resort to a g-tube with either of my girls with special needs, but one has other invasive equipment to deal with and there was no choice that she needed it. In your case, it seems like you have time to make your decision since Ana is taking food by mouth. Go through the hot season and see if she gets thirsty and decides to drink. You can also give her a lot of fluids in the foods you give her, like jello, soups, smoothies, and veggies like zucchini, fruits like watermelon, and you can make your own flavored water (to avoid getting her hooked on sweets) with cucumbers, lemons, strawberries and watermelon added to the water (not all at the same time).

    I avoid unnecessary interventions, but I'm glad they are there when absolutely needed. My suggestion would be to experiment a little more before making your decision.

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  5. One of the biggest difficulties is that Ana loses interest in taking anything by mouth when she is warm... We will see how this goes!

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  6. Popsicles made from smoothies with all those nice nutritious greens thrown in? Jello? Frozen yogurt with protein powder and pureed fruit mixed in? A cool bath before a meal? Does she feel hunger or is she eating too frequently to feel hungry? If she feels hunger, she may be more inclined to eat a larger meal because it takes the stomach 15 to 20 minutes to signal the brain that its full (that's what I've been told which is why we keep eating until suddenly we feel too full at a buffet). If you don't already know, Vitamix has a program to help families with kids with special needs acquire one of their blenders at very low cost.

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  7. We saw a g tube as a last resort. Our daughter, and our group home gal could not chew or drink when they had theirs inserted. They never ate again.
    We have some pretty picky eaters here. We find sneaky ways to add liquids, fats and calories to meals. :o) Mosie has infant formula added to meals (1 scoop 100 cals). And we use broths to add extra liquid to Jakie our "non" drinkers food.
    (((HUGS)))

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    1. Thanks! I have been experimenting with just sneaking as much liquid as possible into Ana's favorite food. So far it is going fabulously.

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