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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Children's health
Weaning children off NG and gastric tubes - the Graz tube weaning programme
Sisa · 21/09/2009 23:24
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Boofers77 · 16/11/2020 22:41
Hi yes I did!! It might be better to PM me. I have lots of things that can help you - if you email me I can give you some tips on this!!
Boofers77 · 16/11/2020 22:41
Hi yes I did!! It might be better to PM me. I have lots of things that can help you - if you email me I can give you some tips on this!!
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.
Kez1828 · 18/09/2023 23:45
Hi. We are still on our weaning journey. It’s fair to say that our SLT team have been useless at supporting us. They have openly admitted there is no such thing as an NG weaning plan with the NHS. I’ve spent hours doing my own reading & research to help my son (we’re seriously considering paying for private weaning). Three weeks is a relatively short period of time, but babies can become reliant on the NG and forget the feeling of hunger as they don’t ever feel this when NG fed. Offering the breast or bottle when they are not hungry comes across as pressure feeding (like trying to force feed us when we are full) and this then makes them refuse. Often you need to reduce NG volumes to make progress with bottle or breast. I recommend Rowena Bennett as a good source of information. She has a book called “your baby’s bottle feeding aversion” which I’m finding really insightful. The problem you will have is SLT not wanting you to wean due to weight loss. Often our NG heroes are over fed, so weight loss is to be expected, but there has to be a threshold to not fall below. We have an NG also because of low birth weight. My biggest regret was not pushing to allow my son some oral feeds. If your son is accepting anything by bottle or breast, my advice would be to keep trying (even if it’s only a couple of ml). Eventually you can reduce the NG volume & increase breast / bottle. Always start with the oral offer & use NG as top up.
I’m no expert but I have done a lot of reading on this topic.
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Kez1828 · 18/09/2023 23:45
Hi. We are still on our weaning journey. It’s fair to say that our SLT team have been useless at supporting us. They have openly admitted there is no such thing as an NG weaning plan with the NHS. I’ve spent hours doing my own reading & research to help my son (we’re seriously considering paying for private weaning). Three weeks is a relatively short period of time, but babies can become reliant on the NG and forget the feeling of hunger as they don’t ever feel this when NG fed. Offering the breast or bottle when they are not hungry comes across as pressure feeding (like trying to force feed us when we are full) and this then makes them refuse. Often you need to reduce NG volumes to make progress with bottle or breast. I recommend Rowena Bennett as a good source of information. She has a book called “your baby’s bottle feeding aversion” which I’m finding really insightful. The problem you will have is SLT not wanting you to wean due to weight loss. Often our NG heroes are over fed, so weight loss is to be expected, but there has to be a threshold to not fall below. We have an NG also because of low birth weight. My biggest regret was not pushing to allow my son some oral feeds. If your son is accepting anything by bottle or breast, my advice would be to keep trying (even if it’s only a couple of ml). Eventually you can reduce the NG volume & increase breast / bottle. Always start with the oral offer & use NG as top up.
I’m no expert but I have done a lot of reading on this topic.
Oh and we have the book already on Kindle - good to know you have found it helpful! 
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