ng feeds

[nuri1976]

my dd is 8 yeasr old has been ng fed for the past two years, her ng is repassed every 4 weeks she dosent have much problem with it but does get irratable skin with it barrier creams and duoderm does not work, the community nurse has suggested for her to have a PEG, went to see the the surgeon and he was totally against it and really put me off,when i speak to nurses they seem to think it would be the best option for her whereas the surgeon has really put me off has anyone been down this road i need to make a decision by the end of the week pls help!!!!confused

I would say it would depend how long she is going to need tube feeding for? 2 yeras is already quite a long time for NG feeding and aside form having to repass it, how does your DD feel about how it looks? Peg is much more discreet and I would be inclined to agree with your community nurse and go for a PEG if enteral feeding is going to continue for some time. Did the surgeon indicate why he is so anti? Are there any other reasons why he may feel it is inappropriate for your DD?
HTH

Hi, my dd2 has one of these pegs.

For is it has literally been her life-saver - her lung health was too compomised by her poor swallow, she aspirated without a cough reflex. It is also so much easier than an NG tube.

She has a high-fat diet based on a low-carb Nutrini and Calogen to fit her specific metabolic needs.

I know there are some adamant "real-food" tube feeders on here who liquidise of real food for their lo's, but that doesn't suit everybody (and certainly not my dd2) - she wouldn't get enough calories in the feeds if we did it that way.

Do you know why the surgeon didn't think it a good idea?

What do you want to know? I'll be back on later tonight if you have specific questions.

We were anti peg for about 12 months but then realised it would be in ds's best interests, and in fact wished we'd done it sooner. He was 3 when his was done, and he still has it now he's 12.

I don't understand why there is a deadline here? If you need more time then you should ask for it, you should not be rushed into a decision.

I know community nurses always go on about confidentiality but speak to her and ask if she can ask one of the other mums who has a child with a peg to talk to you. If not try contacting the support group PINNT - www.pinnt.com/Home.aspx.

On the whole a peg is more discreet, it doesn't need changing as often, and we have never had a blockage.

Questions to ask the nurse are about day to day management and who will be responsible for changing it. Generally I change DS's most of the time as it is much easier than having to arrange for the nurse to do it - but not every parent wants to do this and you need to make sure the supoport will be there.

Starfish - peg tubing diameter is wider than NG tube so blocks less easily - but depends on drug and how you administer it. I have blocked dd2's very successfully with fatty feeds, and again with some antibiotics that set like cement, and any drug ending in "zole"! - but I know now to "pulse" the drug through, and they certainly block far less than the NG used to.

nuri1976 - any more thoughts?

Also, I wanted to mention - we used to put a small patch of hydrocolloid dressing on dd2;s cheek under the NG tube to protect her skin, then the clingfilm stuff on top.

thank u to everuone who took tym to give there valuable advise i am still in two minds even more now cause my husband really fell for the surgeons advise, the only other thing is dd has a shunt which she has had since she was 3 weeks old and the surgeon said that having a peg could possibly cause infection too the shunt, dd has never had a problem with her shunt which is very lucky apparantly as lots of children encounter problems with the shunt ie blockage and infections etc.

Where is the shunt? (in my ignorance I assumed they are usually for draining the brain!) - why would it get in the way of a feeding peg?

The peg is just a quick-access route to the stomach - I can't see how it would affect a shunt unless its right next to it - some children who don't heal well can get a bit icky round the stoma.

yeh da shunt is to drain fluid frm the brain meltedmarsbars ur rite oone end is in brain the other end in stomach or bladder not too sure!!

we have decided to leave it for a while as i am taking children to visit in laws in pakistan in march and i dont really wanna encounter any probs while abroad, hoping we can open this case maybe in a year or so and hopefully see a different surgeon consultant!!

Nuri - DS has a g button and he also has bi-lateral VP shunts (one each side). The surgeon that did the peg explained to us that he would decide whether to do the peg endoscopically or as an open op when ds was in theatre and he could actually see where the tummy end of the shunts were located. In the end he did have to place the button in an open operation, which is actually a bigger op than the other way/longer recovery time but there were no problems with the shunts.

One thing DS's nurse did do, was to arrange that ds was seen for his peg at the same childrens hospital that did his shunts (normally it would have been a different one) which made it easier for the two consultants to discuss things, and that if there had been complications then ds was in the hospital where his neurosurgen was located.