Hi all,

It's been a long time since I've updated. Allie now has an NG tube b/c of her refusal to eat. It's been in for 3 weeks, drives her crazy, and it looks like we're heading towards a peg tube or G tube.

She has only been diagnosed w/ reflux and weak muscles around her mouth and poor suck reflex/rhythm.

I am so worried that there is something else wrong with her that has not been diagnosed yet. She is 6 1/2 months and does roll from tummy to back, but has only rolled from back to tummy twice. She sits with support and can sit by herself for a minute or two, and coos, laughs, etc. She even knows how to jump in her jumperoo.

The GI doc said that all of the kids he does G tubes in have something else wrong with them. I am so scared that something else is wrong with Allie (CP, etc.) that hasn't been diagnosed yet.

Also, should I hold off and not get the G tube? I am scared reading about all of your experiences with bleeding, etc. The NG tube has been pretty bad, she doesn't sleep and I've given her a bloody nose trying to put it in.

Thanks in advance,
Christyn
Allie - 9/2/05

I wouldn't worry about something else being wrong with her right now. Yes, it's true that it's more GERD to this extent is more common in children with other health issues, but it's also relatively common for otherwise "normal" children to have it this bad as well. Keep an eye on her, but try not to obsess too much over the possibility, you'll drive yourself crazy....TRUST me, I've done it to myself!

The down side to having the NG tube for any length of time is it's almost surely going to cause more feeding/oral aversions than she already had. Looking back, if I could do it over, I would have gone for the J-tube much sooner for Shae, before she had lost all her oral feeding completely.

One thing to mention about the gastronomy though, it can make reflux worse in some kids because it increases the pressure within the stomach, thereby increasing the pressure on the LES. Some surgeons will not even do a gastronomy without also doing a fundo to prevent reflux. Now, having said that, not all kids have that experience, Becky's son for example has had a gastronomy and it's not made his reflux any worse.

I'm pretty sure my Daniel (who's had a G tube since June 2005) doesn't have anything else wrong with him. He was a preemie, but except for his feeding problems, those issues have resolved.

I also wish we'd gone to a more permanent feeding tube long before Daniel lost all of his feeding skills. We'd been giving him bottles in his sleep and then force feeding purees all but a couple of months of his life. Somehow we always got the nutrition in him (and so our doctors didn't take us seriously) but it was always a battle, and in the end he got stronger and more willful, and so he needed a G tube (after about four months of NG tube feedings). Since getting the G tube, we've been able to relax and let him go at his own pace. Now he puts lots of food in his mouth, but does not swallow.

And as Roni mentioned, we are very lucky that Daniel's reflux did not worsen with his G tube. We've also been fortunate that his tube doesn't leak and he doesn't have any soreness or granulation. So all in all, our experience has been pretty good. Feel free to ask me any more questions you might have!

I tired three times to tell you my experience Christyn but my computer is about to go out the window... But if you want I would love to tell you my experience and if you had any questions answer them for you. I have been through what you are going through and it is not always fun. If I can make it so can you. I will say things were alot better with the g-tube placement. Beth

The g-tube is a lifesaver for us. We fought the decision for 5-1/2 months and looking back, would have done it sooner had we known how much better it would be for Tucker. He hasn't had any bleeding, only minor granulation that cleared right up with one treatment of silver nitrate and he's much happier with g-tube than ng or nj. We heard the same things about babies only needing g-tubes if they had other (neurological mostly) issues. Tucker was diagnosed with mild CP by our local neuro, but then "undiagnosed" the following week at the childrens hospital. The neuro there (and I trust him more--much more thorough exam, etc) was totally surprised that our local guy would label him with CP. Try not to stress too much about "other issues." As you can see from these message boards, there are lots of "normal" kids that have major issues due to GERD alone. Hang in there.

I agree with the others. I would not hesitate to go with a g-tube, it is soooo much easier than the NG tube. Just today I had a conversation with a c0-worker who talked about a baby that had a NG tube for months and as soon as the G-tube was placed she started eating on her own! The NG tube was so iritating that she did not want to take anything by mouth with it.

Hello , yes I agree with the others my son has had a g-tube now for 2 years. It saved his life and he is much better , sure it is scarey and alot to get used to. But we think it was the best thing for our son. Gaeb was diagnosed with severe Gerd, severe gag reflex,his tummy didnt digest,hyper sensitivty to the face and asthma. He is in a much better place now. Rosie

Max has been tube fed since birth. He had an NG until he was 5 and a half months old when he had a G tube placed (his reflux is quite severe so we now have a J tube too). Like a lot of the other tube feeding moms, looking back I wish we had made the move sooner as the NG was very traumatic for Max; I think we spent a lot of his early months in a kind of state of denial about his health and feeding issues. It was a very difficult decision for us to make but it was the right decision for us. I do wish we made the decision sooner.

Max does has other complications and developmental issues but there are lots of kids who are tube fed that develop fine so I wouldn't worry too much just yet.

Good luck with your little one.

Vicky