Hello all,
the title actually already says it all. Jamie (15 mo) refluxes about 30% of anything he swallows, so he doesn't get enough food to gain weight as he should.
In case he'll get a tube wouldn't it be possible to eat small amounts of food the normal way in order not to develop any feeding issues later?
Regards, Richard
Switzerland

My child is not tube fed, Just wanted to say good luck and I hope one of the tube fed mommies can answer you post...I do believe some of them eat by mouth and also get tube fed, so there is always that possibility?

Does your childs doctor want to place a tube?

I think a lot of kids use tubes for supplemental feeding even though they'll take some food orally.

Alexys' mom, Amy, used an NG tube at night to give her extra food, and it worked well for them. (In our case, the NG tube caused Daniel lots of irritation. But we left it in all the time and he was getting pretty much everything through it.)

Daniel now had a G tube, and even though he'll eat nothing orally, we always put him at the table and he chews (and spits) food while he is tube fed. That way, he doesn't lose the connection between hunger satisfaction and having food in his mouth. And, hopefully someday, we'll be doing exactly what you're describing -- he'll actually eat part of his meal while getting some through the tube.

Good luck! Let us know what you decide to do for Jamie.

My son has a feeding tube in and uses it when he is unable to eat orally. When he is on the feeding tube he can still eat what he can tolerate. Most docs will tell you to continue to feed orally as long as the child can tolerate it and that there are no other problems going on at the same time.

It sounds like your child will need the tube to supplement what he is taking in orally. I do wish you luck and hope that all works out well.


Melanie

Hi Richard:

I know some moms do the tube feeding at night and try to get the child to eat during the day. I would really try to put off tube feeding as long as possible.

Is your dr talking tube feeding?

Have you seen a feeding specialist yet?

best wishes
Jean

Richard,

Evan vomited 100% of his food for long periods at a time, but we still somehow managed to avoid tube feeding. (In hind site, I think it was through the sheer stupidity of the doctors.) Anyway, I agree with Jean about putting it off as long as possible. In the end, you might find that you don't need it. Good luck either way!

Thanks to you all for posting.
We've just returned from an appointment at the children's hospital where Jamie was measured, weighed and assessed again. One doctor even measured the thickness of his skinfolds on his triceps and his back, to see if there's still enough "substance" there. The doctors thaught everything is ok, except of course that he has lost a few hundred grams over the last two months, and we subsequently talked about the different kinds of tubes and a fundo. The two specialists strongly encouraged us to stay away from those as long as possible, just as you recommended as well, and they also told us that virtually ALL motility drugs are more or less worthless if you take into account all the existing scientific studies (is that really so???). So, what to do now? We're changing his high caloric supplement from duocal (maltodextrin & fat, powder) to calorene (only fat, liquid), because his stomach doesn't seem to agree with maltodextrin - he refluxes even more. His esophagitis has healed by now, so they told us, and his ppi dose was cut in half, just to make sure his esophagus doesn't get inflammed again. And we were advised by a dietician to replace two of four cereal-puree meals a day with thickened veggies or fruit only, because cereals tend to stay in the stomach longer and veggies/fruits just sail through. Our next appointment is in two months' time, so we hope he'll be able to gain some weight by then.
Please keep your fingers crossed!
Richard/Switzerland

Hi Richard,
When I first read your post, I thought that you were referring to eating as you tube fed. Larissa does manage to do this. She has the formula going into her g-tube, and then will sometimes take a drink orally, or eat some cookie or other item. I find that this works really well, keeping her mind connected to food and feeling full.
As for whether or not to put in the tube, I guess I feel a little differently from some of the mom's here. For us the tube was a lifesaver, and continues to give her nutrition and peace of mind. Once the tube was in, her reflux reduced by a huge amount, and I disagree that the pump inhibitors are useless. They have a huge effect on the reflux. If we run out of our med and she has to go without, you can guarantee she will suffer the reflux and vomiting. Don't be afraid of the feeding tube, would you be worried about wearing a knee brace if it helped to support the ligaments. Think of the tube as a support system to the other nutrition you are providing. I was scared at first to make this move, but when I saw the difference the consistent nutrition made for her, I never regretted it. I don't know how much reflux your child suffers from, but continually reflux will, they all say, eventually end up in eating problems, cause they just learn that if you don't eat, then it doesn't hurt. Don't let your little one learn that, cause it is really hard to retrain them to eat.
Just my thoughts. Ya we all want to avoid the medical intervention is possible, but not at the possibility of long term negative effects.
All the best:hello2:

Hello , me too I think a little differently as well about the tube. Gaeb our son was failure to thrive at 2 and he got a fundo and G-tube. It saved his life, sure it is a struggle and yes there is alot of feeding issues. He barely eats but we know he is now getting what he needs to be healthy.We hook him up and gravity fed. We also while he is hooked up give him something to eat at all the meals times with his family. Gaeb has alot to over come but we dont have to worry about him starving. So I think if it is needed it ,you can't be caught up in will he eat but just let it happen when he can . Good luck. and God bless. Rosie ( he is 4 now)