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Weaning children off NG and gastric tubes - the Graz tube weaning programme(8 Posts)
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.
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.
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.
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
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
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.
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???
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