Anyone successfully weaned DC off a long term NG tube?

[kiwiwife]

Our 11 month old DS has been on an NG tube since he was 3 months old (when he was failure to thrive). No diagnosis as yet, but he does have developmental delay as well. Has been tested on DNA, MRI scans, bloods, you name it, he's had it tested. He's on a continuous pump overnight, and we offer him 3 feeds a day of various purees and yoghurt. He's not keen on lumps yet. He's started to eat yoghurt fairly happily, but isn't keen on many (if any) other foods. We then put about 50mls of Infatrini milk into his stomach via the NG tube, which sometimes he tolerates but sometimes vomits up. He seems to have a very small stomach capacity. It's likely he's going to have to have a gastrostomy, but before this we would like to see if he could eat of his own accord. Trouble is, we can't find out if anyone has done this successfully. The paediatrician says he hasn't seen babies transfer to oral feeding at this stage, but we just wonder if he might. He drinks some water from a flip top cup, but has only just started to do this recently. He isn't keen on drinking milk orally at all at the moment, but we're working on it! His weight at the moment is in the normal range, although it is a little low. Has anyone got any experience similar to ours and can offer advice? TIA...

we lost the ng tube early on but ended up having gastrostomy years later

dd does eat. Gastrostomy can be better for that as not interfering with swallow as much as ng tube

trying to say that having the gastro will not be giving up on yr ds ever feeding orally

All this 'window for eating / speaking' stuff - don't get too panicky about it. I know I did and rushed dd into oral feeds / solids as a result

my friend is getting her dd to eat at the age of 4. Plenty of kids on here not spoken until 7 +

just keep doing what you are doing and attempting to introduce at his pace

Yes keep working on it.
No experience myself, but we were in hospital last month for DSs MRI and another little fella was there for his. His Mum had started persevering with oral feeds when he was 3 and he was doing very well indeed!

Do you have a 'feeding team' you can contact for advice?

kiwiwife - my dd had her ng for around a year - we were probably trying to wean at a similar age to you. A lot of dd's issues were around control so she did best when she could feed herself and she wasn't able to do this efficiently until around a year, although at that point it was mainly via her fingers and not a spoon. Custard eaten with the hands is a sight to be seen. She wasn't keen on lumps really but did a lot of sucking of toast and the usual finger food things.

We cut down on dd's pump feed as I don't think she was hungry during the day but I found it a difficult balance to strike giving enough to maintain her weight but not so much as she wasn't interested in eating. She never took to bottles really as she couldn't suck so we went straight to lidded cup.

dd lived on a very limited diet for quite some time. I gave her what she would eat rather than trying ranges of foods simply because I wanted her to eat something orally and she made most headway with her familiar foods (usually it had to be beige)

This sounds familiar to us, particularly about the control factor .... after 3 months of placing ricecakes in front of ds, he has finally picked them up and has put into his mouth - although I don't think he's swallowed any yet. When we tried to put them into his hands he wouldn't have anything to do with them. He's very averse to finger foods but with his cup, if he can 'drive' it then he's happier drinking then when we try to aim for the mouth. Maybe in a couple of months he'll be picking up more food.

Also the bit about striking the balance between the pump and the amount of food going in the conventional route. Poor ds doesn't get any say in how much he wants to eat really.

My question is has your dd now got over it all and does she eat 'normally'? I know our normal is different to most others, but if I know it can be done then it gives us lots more hope! Thanks everyone so far for your comments and help.

dd is 15 now kiwi. I think I can say that she eats normally, yes. She does have very restricted tastes even now, for example no fruit whatsoever but it's not something that impacts hugely on her life. If we go out for a meal there is always something she will eat. And what she does enjoy she will eat huge amounts of Having spent the first couple of years just trying to get her to eat something I rapidly came to the conclusion that variety wasn't something I was going to get in a state about. I know that it's not the way everyone sees it but it worked for us (albeit that it took some time and effort). If I found something she would eat with gusto (Heinz tinned macaroni cheese for what seemed like years )then that's what she was served because it wasn't about the food really it was more about the mechanism of eating something orally.

I think the control thing is a huge issue TBH. As you say at the moment your ds has no choices here, he's fed whether he wants it or not (for all the right reasons) but he is trying to take some control over it. And having the tube passed - again no choice and getting pretty traumatic for you both at this age I imagine.

Good luck, keep at it but don't let it become a battle. I know that's hard because your every instinct is to nourish your child and it can get to the point where you're just living from one 'meal' to the next.