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Weaning children off NG and gastric tubes - the Graz tube weaning programme

37 replies

Sisa · 21/09/2009 23:24

Hi, after what seemed an eternity we finally managed to wean our son Alex off his NG tube which he had inserted when he was 11 weeks old. He was only supposed to have it for a couple of weeks until his surgery to correct his breathing, but that was not to be - he became dependent on it and it was only last month, 16 months later, that we finally said good bye to it once and for all. We sought help from an Austrian hospital in Graz which has a world-class specialist unit for weaning children off feeding tubes. They have an incredibly high success rate (of 96%) - their website is www.notube.at. The website is an amazing source of information and useful links for parents who, like us, are pulling their hair out over their child becoming tube-dependent for much longer than was ever thought necessary. Although our NHS helped us as much as they could, after a while we realised none of the experts simply knew how to tackle the tube dependency. We were left totally bewildered and angry that nobody had meaningful answers or plans for us to implement. We have since learned that our NHS simply does not recognise tube dependency as an issue and there are no specialist clinics here to tackle this problem. If this post helps at least one child, I would be over the moon! If anyone would like more support or information I would be more than happy to help.

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Sonel · 19/09/2023 12:28

Hi,

I just got my son weaned with growing independent eaters. He was out on the NG for food refusal and diagnosed with reflux from 9weeks old. Never had anything orally untill a month ago. He is turning one this week.

it’s the best thing I’ve ever done. The dietician and SLT in the NHS don’t work together, they have no idea what to do.
you can DM if you have any questions

LadyEmmalina · 19/09/2023 17:27

Thanks both, I’ll definitely have a look at Growing Independent Eaters!

We are also currently looking at Graz/NoTube! X

Sonel · 20/09/2023 10:20

I looked at this to, but they basically cut you of after 30 days of no tube. GIE don’t, and they were cheaper.

I also booked a consultation with Baby care advice but I found them less supportive.

Gabby2492 · 17/02/2024 13:40

Sonel · 18/09/2023 23:34

Hey,

my son was bottle fed till 9weeks, he was diagnosed with failure to thrive and reflux;
nhs have no idea how to handles babies that fall into a very limited category. Join a few Facebook groups, and feel to message me whenever you need support,

my son was tube fed for a long time, because the nhs dish r know what else to do. If I can help in anyway I will.

Hi

I'm in the same situation and struggling. Could you share some tips, please?

EliseMc · 29/03/2024 00:02

Hi,

I know this is a really old post but desperate for any help or advice people can give as NHS and SALT don’t give much support in terms of weaning of the NG tube.

My daughter is 4 months old and had an NG tube since birth. She has a safe swallow and can take small amounts orally. She had really bad reflux and a cows milk protein allergy which meant she was in a lot of discomfort when feeding as we tried different formula and medication to see which worked best. She now seems more settled however I feel like she has developed an aversion to feeding and pulls away or avoids the bottle.

If anyone has any advice or tips it would be massively appreciated. We would love to be able to get rid of the NG tubr

Kez1828 · 29/03/2024 07:43

Hi. We’re currently weaning our little boy from the NG (prem baby). He’s 16 months & we are desperate to get rid.
We’re weaning with GIE (Growing Independent Eaters) who advised us to initially stop using the pump & syringe feed (at a slow pace) to help prepare the tummy for normal intake times.
Our wean is currently on pause as my little one got ill & hit the weight loss threshold. But prior had started to consume all his milk intake by mouth for some feeds & was super excited for food.
GIE offer a free intake assessment, it might be worth looking into. I hear the earlier you wean, the easier it is. Our SLT & dietician were useless so I know how you feel.
Good luck!

Gabby2492 · 01/04/2024 21:57

Sonel · 18/09/2023 23:34

Hey,

my son was bottle fed till 9weeks, he was diagnosed with failure to thrive and reflux;
nhs have no idea how to handles babies that fall into a very limited category. Join a few Facebook groups, and feel to message me whenever you need support,

my son was tube fed for a long time, because the nhs dish r know what else to do. If I can help in anyway I will.

Hi we are in the same 'category,' do you have any tips or advice to wean our baby off the tube?

Choc2022 · 27/06/2024 01:45

Kez1828 · 29/03/2024 07:43

Hi. We’re currently weaning our little boy from the NG (prem baby). He’s 16 months & we are desperate to get rid.
We’re weaning with GIE (Growing Independent Eaters) who advised us to initially stop using the pump & syringe feed (at a slow pace) to help prepare the tummy for normal intake times.
Our wean is currently on pause as my little one got ill & hit the weight loss threshold. But prior had started to consume all his milk intake by mouth for some feeds & was super excited for food.
GIE offer a free intake assessment, it might be worth looking into. I hear the earlier you wean, the easier it is. Our SLT & dietician were useless so I know how you feel.
Good luck!

Hi. Jumping on this thread and particularly your post. My son is 15 months and we're contemplating GIE but currently don't have the funds ready. Curious as to why you did syringe feeding, syringe feeding for us I think would be quicker. Feeding by machine takes us 40 mins (270ml x 395 speed). Any other tips please? Our weaning is veery slow, some days non existent. Any tips I would be eternally grateful for.

BonbonM · 27/08/2024 01:00

Hello. My daughter she is 11years old. Its one year not eating.. she is from February on NG feeding tube. She afraid of swallowing. Its just so hard to see her like this.. maybe have any advice from where to get better help or private help.. ? Thank you

Boymumma89 · 04/09/2024 09:40

Hi,
Can anyone advise me please with NG tube weaning ?
My son is 4 months old tomorrow, he spent 3 months in NICU and has had an NG tube for 3 months. He outright refuses bottles and has become completely dependent on the NGTube.
Our local area SLT don't support under the age of 1 and no one seems to know how to help us. I've looked at the online programs like baby care, GIE and notube but can't afford it right now. Is it worth buying the Rowena Bennett book about bottle aversion could that be used to help him onto bottles and be rid of the tube?
Before we were discharged the SLT inpatient team assessed him as having a safe swallow, we try to encourage the bottle before every feed but he absolutely hates it and won't even try anymore.
If anyone has any advice or has been in a similar situation please can you help me? Feeling at a loss.

LangfordM · 04/09/2024 13:41

Boymumma89 · 04/09/2024 09:40

Hi,
Can anyone advise me please with NG tube weaning ?
My son is 4 months old tomorrow, he spent 3 months in NICU and has had an NG tube for 3 months. He outright refuses bottles and has become completely dependent on the NGTube.
Our local area SLT don't support under the age of 1 and no one seems to know how to help us. I've looked at the online programs like baby care, GIE and notube but can't afford it right now. Is it worth buying the Rowena Bennett book about bottle aversion could that be used to help him onto bottles and be rid of the tube?
Before we were discharged the SLT inpatient team assessed him as having a safe swallow, we try to encourage the bottle before every feed but he absolutely hates it and won't even try anymore.
If anyone has any advice or has been in a similar situation please can you help me? Feeling at a loss.

Sorry you’re going through this. Sounds similar to my twins. We did have monthly SLT appointments but to be honest they just sat there and watched them try to drink from a bottle which they never did so it was all a bit pointless. We did have the swallow X-rays which showed safe swallow. We had help with a dietician and got them off their tubes at 10 months old by just reducing their feeds and they eventually drank from the honey bear straw bottle. Now they’re 2 years old and have no medical issues so we put their “bottle aversion” down to being overfed and never having the desire to drink.

SamsamSama · 14/11/2025 20:32

I’m struggling with weaning my 9months corrected baby from the NgT. Has anyone got any tips? What did you do? How did you babas conquer the wean?

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