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So she's getting a G-Tube....

(16 Posts)
sarah293 Sat 12-Jul-08 07:38:00

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HairyMaclary Sat 12-Jul-08 08:28:44

I don't have any personal experience of this I'm afraid but I know you didn't want this. I'm sorry. The only child I know who had a gtube has severe CP that appears pretty similar to your DD's, he had it put in at about 2.5 years and he's thrived since then and looks really healthy. Can you keep feeding her orally at the same time so she doesn't loose the feeding skills or does it not work like that?

2shoes Sat 12-Jul-08 10:19:38

no personal expierence. but I have 2 freinds who dc's are tube fed.
one could never eat, but is now eating some pureed food.
the othe (who sounds more like your dd) has the tube feed as a back up. he insists on feeding himself(brain injury) so is under weight. so he has a top up feed.
is it possible you could do this. still feed her but use the tube for a top up?

2shoes Sat 12-Jul-08 10:20:33

oh and if you want I could put you in touch with the second mum. she is very expierence in fighting the doctors

TotalChaos Sat 12-Jul-08 10:29:23

sorry I have no knowledge or experience of this whatsoever. Have you posted this over on SpecialKidsintheUK as well, as there will probably be people on there who have been through this.

strawberryfields Sat 12-Jul-08 10:46:40

DS has had a gastrostomy for 4 years. He is totally tube fed as his swallow has deteriorated over the years (would have done anyway, not related to having tube placed). So it's literally saved his life.
I know several children who just use their tube as a way of topping up when they are ill or just for fluids, medicines ets. Unless she has an unsafe swallow she would not need to stop eating I expect.
I know lots of parents who say after the op that they wish they'd had it done years ago.
Happy to answer any Qs.

sarah293 Sat 12-Jul-08 12:54:49

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glitteryb6 Sat 12-Jul-08 15:41:26

Hi Riven, i was wondering how things were going with you both, we are off to hospital on monday for a 24 hour pH study and a videofluoroscopy to decide whether they are going to do the fundoplication at the same time as the PEG.

You'll probably have read this info already but i found it helpful...

PH study
www.ich.ucl.ac.uk/factsheets/families/F030165/

Videofluoroscopy
www.ich.ucl.ac.uk/factsheets/families/F070280/index.html

Gastrostomy
www.ich.ucl.ac.uk/factsheets/families/F000380/index.html

Fundoplication
www.ich.ucl.ac.uk/factsheets/families/F060261/index.html

MannyMoeAndJack Sat 12-Jul-08 17:50:41

No personal experience. A friend's ds has a G-tube for fluids but can still eat orally, though I think it is time-consuming and messy. I know that the site of the tube is often infected sad, sorry not much help

STD Sat 12-Jul-08 17:56:34

I don't have personal experience either riven but do know lots of children with g-tubes and I would say that pretty much without exception the children have thrived with them. I do agree with Hairy that if she has a safe swallow it's probably a good idea to still orally feed (especially is she enjoys cake smile) and use the tube to top up. It will really take the pressure off I think, knowing that she's getting her meds and nutrition.

(it's Saggar by the way - must name change back as I keep having to assure people that I don't have an STD lol)

NineYearsOfNappies Sat 12-Jul-08 22:24:24

once over the surgery def best surgery dd has ever had.

all drugs through tube, no more missed doses through dribbling, coughing up, refusing, aspirating, etc. Saves teeth too.

all liquids through tube - fewer chest infections, fewer choking episodes, better control over constipation and less chance of kidney damage.

eats better now she can eat whatever she wants whenever she wants with no pressure - has more energy to get on with eating and also has more energy to put into other living activities, including learning.

downsides. Can take a while to heal. it's a GA - 2 if you have to do PEG then button. that's about it really!

LottieD Sun 13-Jul-08 09:26:55

My little girl has hydranencephaly, and whilst she eats and drinks ok she is tiddly and goes right off her food when she's not feeling well. Maybe this makes me a terrible Mummy (I don't think it does btw, but I know some who do) but I have asked for her to be referred to Bristol for a gastrostomy because having adequate nutrition and fluids can only be good for her surely?! I know how scary it is but without exception every parent I know who's child has one has said it's the best decision they ever made. We were told my little girl wouldn't make one and she's 26 months now, so I also know how terrifying the thought of being without your child is. Hugs xxx

sarah293 Sun 13-Jul-08 10:40:46

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LottieD Sun 13-Jul-08 11:25:02

We juat got our initial appointment through for August 26th, our paed thinks it will be about 6 months from then she will get the peg. I guess you're under Bristol childrens too? We were in Frenchay for 5 weeks when she was a tiddler. There is talk about not using a ga for her op but we need to see the surgeon about it all. I'm a bit scared about what it entails but I know it will be useful. xxx

sarah293 Sun 13-Jul-08 12:33:39

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LottieD Sun 13-Jul-08 16:44:11

I know 6 months seems like a bit of a wait, dd is non-urgent might be less otherwise. We are seeing Mr Garret-Cox (or a member of his team)

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