My child is tube fed AMA #TubeFeedingWeek

[SleepingStandingUp]

Just that really. In honour of tube feeding week, does anyone have any questions about children / adults who are tube fed?
If you have your own experiences please do chip in with answers of your own.

DS is 5 now, he had an NG from birth and now has a gastrostomy. He was born with a diaphragmatic hernia and basically all stemmed from there

Thank you for highlighting this issue. There are 10,000s of people in the UK who are tube fed for various reasons. Can I ask if your DS is fed via a pump or a syringe? Also does he get all his nutrition from tube feed or can he eat or drink a little ? So sorry if this is intrusive.

Of course not, that's why I put it up x

He's fed by a pump and it takes about 20 minutes to go through and at 5 cannot sit still that long 😁. We used to do gravity feeds as a baby but my GOD it was hard work holding a syringe of milk up and watching the levels Bob or hold. Going onto pump was a real life changer for us.

He gets about 360 calories from his milk, the rest he eats. He only drinks water which doesn't help and he doesn't have a huge appetite and a pretty restricted diet due to sensory issues. He won't drink milk because he's convinced he's tried it before and doesn't like it so it kinda psychs him out before he's got there, same with lots of other wet / white foods

What are the downsides to the tube?
Any more reflux?

What would you say to families who are trying to decide whether to go for a tube for their child?

Because ours was fit at birth and he couldn't feed, it wasn't an option of yes or no. It just was.

If we were where we are now without a tube I think it's about - are they coping without it? Are they gaining weight and growing steadily even if it's slow? Do they have a good relationship with food? Using a tube can help them grow and take some of that pressure off so they have time to get a better relationship with food. But Def speak about an end plan, for us I have no idea when he'll stop needing it, I'm hoping we can rationalise when he's older and him wanting to get rid of it will motivate him to try to eat and drink more. But if it was a new tube I'd want to talk about the whole plan, not just the tube going in.

There's also a decision about swapping from NG to gastrostomy which was largely taken away from us. We've been very lucky in that he's always had a healthy site and it was the right call, he had it at 13 months and it made him look less "different", it felt better for him in his throat and requires less replacing.

He had massive GERD as a baby, omeprazole and gaviscon for years to control it. I've no idea what it would be like without a tube.

Downsides, he never learnt hunger queues until he was much older. He never cried for food or asked for it as a need because he had this regular milk going in. we switched it around by doing milk after oral feeds but it was still years (not helped by speech problems) before he really felt hunger. And i guess he could be lazy and not eat, knowing he had that back up