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Switching from NG to NJ tube feeding to help with reflux(15 Posts)
Hi mums, we have a dilema on our hands. DS2 is 7mths and still has bad reflux. He is tube-fed as he refuses to drink any milk (he also has laryngomalacia and milk allergies). He had a balium swallow x-ray which was a total disaster, he had a horrid reaction and showed the full force of his reflux to the radiologist, so now his paediatrician is worried and told us she wants to put him on NJ tube feeds, as apparently that will help his reflux. She is not good at explaining the pros and cons of this, and we certainly do not want him to have NJ tube long term. To start with, what would the long-term effects of x-ray radiation be on him - he does go through his NG tubes very quickly and has already had a few x-rays. He would need one each time the NJ tube needs replacing. Also, we would have to feed him very little amounts all day long and put him on pump at night - total nightmare if you ask me and no quality of life for him or us. He can cope with quite large feeds - 250ml max, we do lose some of it through reflux but not all, as most of his episodes are between feeds - he is very phlemy and that irritates him. Luckily, his gastroentologist from GOSH wants to run few more tests (PH study and 3-day allergy study) so we told the paediatrician (who works closely with the gastro doc) to hold off with the NJ tube. Can you please tell me if NJ tubes worked for your little ones and if anyone's babies had them long-term? Any problems with them - i.e. are we unduly worried and are doing the wrong thing not letting him try it out? The paed wants us to think about it, she will be calling on Monday again! How can we think if we do not have any information? All she keeps saying is that it will be good for his reflux. We do not trust her much, in the time she has looked after DS2 she has not once bothered to examine him, she just looks at him and chats with us which infuriates my husband massively. But we do not know if this NJ tube was her idea or the gastroentologist's, we are too tactful to ask that and to be honest it does sound like yet another one of her quick fixes. Hopefully you will help with your expertise! Thanks v much.
My youngest has a heart condition and whilst she never had a formal diagnosis of reflux she certainly vomited an awful lot! During one of her stays in PICU they made the decision to go for an NJ tube and I think it did make a difference (everything's a bit hazy ,she's 2.7 now and all this happened during her traumatic first year). I've lost count of the number of times she had to go down to x-ray to replace it as she kept pulling it,little minx! She did eventually had a g-tube which really did make a difference to her vomiting,literally stopped overnight. Her cardiac consultants were quite supportive of her having the g-tube though as at that point she was on overnight feeds via a pump and made a difference to her coming home.
Thanks, yes we are starting to think that G-tube is what he needs, he is nowhere near wanting to eat by himself and apparently babies with G-tubes take better to re-learning the eating habits. He is still on just milk and a bit of baby rice. He is 8kg now and I think it may not be feasible to feed him the quantities of milk he needs to grow through the NJ tube. At least with G tube it will be off his face and no x-rays. All of the phlem problems started when the NG tube was inserted and will not dissappear with the NJ tube, but might do with the G-tube as his throat won't be constantly irritated by a foreign object.
We are not sure about the fundoplication, has your lo had this surgery Riven? It is still a possibility that he is allergic to sth, and that has to be ruled out before they consider the last-resort fundo I think.
allergic to sth?
DD doesn't need a fundo as she doesn't have an apparent reflux. She is getting a G tube though cos at 4 she weighs 12 kg.
mhm, reflux can apparently be allergy-driven. Hope the G-tube helps your lo.
Snorris, does your lo still have the g-tube or did she start eating herself when she got stronger/older?
Dd4 was weaned as normal and luckily took to it very well. At that point she was only using it for overnight feeds. (At her worst she'd been on continous feeds of some really ridiculous tiny amount per hour). We stopped using the g-tube (well,button) around Christmas last year and it was taken out this June. She eats and drinks practically everything put in front of her,but I don't know if this is due to good fortune or the fact she has older sisters that eat well.
That is reassuring. Was the op to fit the g-tube traumatic or not a big deal at all?
Compared to cardiac surgery it was a doddle! (Sorry ). I think it was fairly quick and she certainly recovered from it well. She did only have the button and not the fundoplication so I can't comment on that part. Some bruising at first and oral fluids were restricted initially but she gulped down her first 50ml of milk that she was allowed . I do have some pics of the button a few months after surgery if that helps. I can put them on my profile briefly if you like.
Hi Snorris, yes, the photos would be very helpful. Another question if you do not mind - I checked the GOSH website, and it mentions 3 devices that can be inserted for gastric feeding, PEG, button and can't remember the third one. Which one should we ask for if we have the choice? I get the impression that the button is the easiest to use...
Ok will put them on for you . I have no experience of the others as the surgeon went straight for the button as he said it saved further intervention later on. I certainly found it easy to use and it's very neat under clothes. Have you looked at the Special Kids in the UK site? (I've registered but never really used it ). They may be able to help too.
I've seen the photos, thanks for putting them on so quickly. The button is tiny, i expected something much scarier looking, so am pleased. Now the button is out, is there a noticeable scar to remind you of it or has it all healed nicely? I think the button might end up being much easier to manage than the NG tube.
It has healed beautifully. It does look like a tiny belly button TBH.It is only a few months since it was taken out so it may fade even more. We joke that she is extra-special with 2 belly buttons . The button is much easier than the NG tube,particularly as they get older and little fingers like to pull the tube out! The other advantage is that the button is hidden and you don't get people staring like with an NG tube .
Did you take DD4 swimming whilst she had the button? How did you cope with it all with other 3 children to look after too??? We only have one older boy (VERY energetic & demanding though ) and if we did not have friends/family for support we would be really struggling.
I've never taken her swimming but only because I've never taken any of them . I believe it's not a problem,I know we were told not to put her in deep baths for a short period of time but after that it was ok.
I have an 8 year gap between my eldest and the twins so she's been old enough to understand and help out. Dh did have a lot of time off work at the beginning, fortunately his employers have been excellent about everything . My parents also live close by so they've been able to help out too. I do get respite from our local children's hospice and another agency but things have been a lot easier since the twins have been at school. I am fortunate that whilst dd4 has a serious cardiac condition she doesn't have any other 'problems' (for want of a better word). When I go out it's just like taking any other 2 year old shopping etc.
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