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

Sisa · 2009-09-21T22:24:29+00:00

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.

Are your children’s vaccines up to date?

Set a reminder

saggarmakersbottomknocker · 22/09/2009 08:24

Sisa - glad you've had some success. A couple of parents I know have been to Austria and weaned off tube successfully. One of them (story here) has been in discussions with GOSH on the subject and the Professor has been over to do a workshop so hopefully the NHS may begin to take on board some of the issues.

Original poster

Sisa · 22/09/2009 10:21

saggarmakersbottomknocker thanks for your message, I am so pleased for Luca, I will go on his blog to get in touch with his mum, I think she may have worked for my law firm! How very interesting that GOSH are in talks with Graz. I hope they will form a partnership with Graz or even better set a clinic up at GOSH! Alex has an excellent gastroentologist there, but it was actually him in the end who advised us that Alex was not a suitable candidate for Graz and so declined to recommend the NHS funding for treatment abroad. We really do not know what his reasons were, he just left us a message through his colleague and that was it. We were furious as he was impossible to get hold of, and in the end we used our common sense and intuition and went ahead with the weaning regardless. GOSH do have a feeding clinic but Alex did not get a place there because he was not right for it either - it is only for the children with extreme oral aversions which thankfully Alex did not have. So either way, GOSH was truly hopeless on the tube weaning front. We have an appointment at GOSH coming up in October so we will have a big rant then.

OP posts:

saggarmakersbottomknocker · 22/09/2009 17:01

My dd had her ng for a year. It was a long old road to get her off it and she still (15 years on) has some residule issues around food. She would have been unsuitable for the programme (if it had existed) as she couldn't, for medical resons, go cold turkey without the tube but the clinic does seem to have some success and the NHS would be wise to take notice of them I think.

I expect you have the camera out non-stop now you can see Alex's face in it's entirity

sarah293 · 22/09/2009 17:15

This reply has been deleted

Message withdrawn

Original poster

Sisa · 22/09/2009 23:16

The NHS cold turkey idea of 'see what will happen when he next pulls the tube out' was a total killer for him too, he could not cope with it and that is why all of our previous attempts were doomed to failure. the clinic has different approaches for each child depending on their medical background & feeding skills. Alex was a really poor drinker when he had the tube, we were over the moon if he managed to sip 30ml in half hour. We were really anxious about him getting dehydrated, that's what happened during our previous diy attempts. so the clinic suggested a very slow approach, keeping tube in but only using it in the afternoon and evening, and when Alex was ready, a few days later, only using it for the evening feed. If Alex was stressed, then take a step back etc. This really worked for him and in fact he progressed much faster than we thought he would. We took his tube out one week into the weaning programme and that was it.
great to hear from you Riven. sounds like your dd's tube is giving her a much better quality of life - 2 hours a day over medicine must have been so stressful for her. hopefully one day she will be strong enough to manage drinking. Alex still gets fed up with sucking liquid from the the cups/straws etc but we have found an unorthodox solution - the nurofen syringe - we squirt 3-4mls of liquid into his mouth and all he has to do is to swallow it! He can manage 100mls in 5 minutes flat and loves it! the camera IS out non-stop

OP posts:

Heathy123 · 11/06/2014 17:27

What tip can u give when starting ng wean, son 14mths old been on ng for 12 mths, seem to taste but holds food in mouth, not swallowing, forrmer trache.

Boofers77 · 02/08/2015 15:10

Hi can anyone offer any advice to get my 7 week old off the NG tube? She no longer needs it but has complete oral aversion. Desperate to get her off the tube. Can anyone help???

Mebutl · 16/11/2020 20:56

@Boofers77 did you have any luck with this? I’m currently experiencing the exact same problem with our 9 week old

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!!

Jenno7 · 14/03/2022 04:41

Hi! I know I’m tagging on this post a few years later but wondered if you had any tips for weaning off ng? DD is 4 month snd can breastfeed but chooses not to 🤦‍♀️Desperate to get her off the tube!

Apat9128 · 25/07/2022 13:17

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!!

Hi I hope you don't mind but I've just pm'd you also desperate for some tips and help to wean my baby off the tube. Thank you!

LangfordM · 11/11/2022 09:45

Hi, I know this is a really old post that I’ve just stumbled across but my 4 month old twins are both NG tube fed and I’m desperate for some tips if it would be ok to message you still? Thank you!!!!

LangfordM · 11/11/2022 09:45

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!!

Hi, I know this is a really old post that I’ve just stumbled across but my 4 month old twins are both NG tube fed and I’m desperate for some tips if it would be ok to message you still? Thank you!!!!

SPatel1 · 12/06/2023 15:06

Hi, my little boy has been on a tube for the last 7 months and I to am coming to realize the NHS no know nothing about tube dependency.

Please can I have your advice and experience, I am so desperate!

Thank you

Kez1828 · 13/07/2023 08:33

Hi. My son is a former preemie & has an NG since birth. We’re also trachie since 3months. We have started the NG weaning journey (desperate to get rid). Does anyone have any tips to share?

LangfordM · 13/07/2023 11:53

We managed to wean our twins off their tubes when they were 10months (this was 2 months ago now). The only bottle they would take was a honey bear bottle with a straw so this is what they have all their milk from now. Their dietician said once they could take about half their daily milk orally then we could take their tubes out. My little girl would drink about 300/350 from the straw but this point but my little boy only took about 200ml. The dietician was happy for us to try without the tube and since then they both just started taking more and more. We just made sure they had other foods which had lots of water so keep hydration ok. All we did to get them to take the state in the first place was just keep offering them eventually one day they tried it. The honey bear straw is good because you can squeeze it so the little ones learn from there. Hope this helps!

LadyEmmalina · 18/09/2023 23:25

Did anyone have any joy weaning off the tube, especially with young babies (ie not ready for solids)??

We have a 9 1/2 week old who we are desperate to get back to oral feeding after three weeks of tube.

He was fully breastfed prior to hospital and used to also have a bottle earlier on in his life (but has never been a bit fan of it for various reasons). No sooner was the tube passed and he went right off feeding! 😔Does the occasional short BF but very hit and miss…sometimes just cries at the boob!

No swallow issues or underlying medical conditions which should prevent oral feeding (as I said, he orally fed prior to the tube), although he does get uncomfy with feeds (bit reflux/gassy). His tube was solely passed for weight gain reasons.

If @Boofers77 is still around, I’ve PMd you….or if@Jenno7 @LangfordM @Apat9128 @Kez1828 @Mebutl @SPatel1 had any joy then please let me know, either here or PM me.

I'm so desperate for help! Infant feeding lead and SALT at children’s hospital seem at a loss, which worries me no end! 😭

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.

Jenno7 · 19/09/2023 06:15

Send you a DM 🥰

LadyEmmalina · 19/09/2023 08:21

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.

Sounds like exactly where we are at the moment!! Any and all tips gratefully received! We are quite willing to pay private specialists if we need to, but don't even know where to turn to begin with!

LadyEmmalina · 19/09/2023 08:25

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.

Thank you!

Yes, I think his hunger cues are all messed up and even when he does show them, I'm not sure he's convinced he wants to do anything about it. We have good days and bad.

Yesterday we were allowed to remove the tube for a short time to skip a feed and also remove the feeling of the tube in the throat and see what happened but then (unbeknownst to us ahead of time) he had to have 5 blood samples taken, which took three attempts...so poor man screamed himself out and then slept all afternoon!! So not a fat lot happened but it wasn't really a representative go!

LadyEmmalina · 19/09/2023 08:27

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!

LangfordM · 19/09/2023 09:23

We managed to twin our twins ourselves off the tubes when they were 10 months. We ended up taking the tubes out when they would only drink about half what they should but then they just kept drinking more and more once the tubes were out!

Kez1828 · 19/09/2023 11:56

Hi. GIE (growing independent eaters) has a great website and Facebook page (including a group for patents considering g private wean). I have found this really helpful. There’s also a tube feeding support uk page on Facebook with lots of support & advice. There’s also an Austrian company called no tube that has a great website & parental information. I found these a great starting point.