Discussion
Following an appointment today my son is up to 10.7kg which is good because it's a gain but isn't great given that he's almost 3 years old. In March he had a Nissen Fundoplication and a PEG tube inserted. He still vomits violently and was prescribed Levomepromazine which didn't help much and had some unwanted side effects.
The consultant has decided that the Fundoplication isn't doing a good enough job and doesn't see any point in removing it and retrying and has recommended we go one stage further with a Jejunostomy alongside his existing PEG.
Does anyone have any experience with one of these? BlackVanDyke possibly?
The consultant has decided that the Fundoplication isn't doing a good enough job and doesn't see any point in removing it and retrying and has recommended we go one stage further with a Jejunostomy alongside his existing PEG.
Does anyone have any experience with one of these? BlackVanDyke possibly?
Edited by SBDJ on Thursday 15th September 00:12
SBDJ said:
Following an appointment today my son is up to 10.7kg which is good because it's a gain but isn't great given that he's almost 3 years old. In March he had a Nissen Fundoplication and a PEG tube inserted. He still vomits violently and was prescribed Levomepromazine which didn't help much and had some unwanted side effects.
The consultant has decided that the Fundoplication isn't doing a good enough job and doesn't see any point in removing it and retrying and has recommended we go one stage further with a Jejunostomy alongside his existing PEG.
Does anyone have any experience with one of these? BlackVanDyke possibly?
a Jej goes further into the digestive tract - so hopefully you won't get the pooling, backflow and vomitting that you are getting the the peg ... the jejunum is the last bit before the small bowel.The consultant has decided that the Fundoplication isn't doing a good enough job and doesn't see any point in removing it and retrying and has recommended we go one stage further with a Jejunostomy alongside his existing PEG.
Does anyone have any experience with one of these? BlackVanDyke possibly?
Edited by SBDJ on Thursday 15th September 00:12
IIRC Becca's peg is just an ordinary peg - but i'll wait for her input rather than making more of a prat of myself than necessary...
You called? 
I'm so sorry that Mason's not doing well with his PEG - rotten luck, really. These issues can be grown out of with time - the trick is getting them to do the growing with all that puking going on! Which is where the tube comes in.
I have a few friends with a GJ tube (as they're known in the trade as they usually use the same hole as for the PEG but then go through the valve into the jejunum) and know a few more with littl'uns with one.
It has a few potential downsides, I'm sure you've already discovered those - the biggest one being if it comes out you'll need it putting back with the help of a radiographer to make sure it's in the right place, which can be a royal pain in the bum for someone with an active kid who yanks on it regularly (hopefully Mason is not one of these - argh!).
If you are comfortable on Facebook, there's a 'feeding tube awareness' group on there that has a HUGE amount of really valuable information-sharing and such with about a 1:9 ratio of people with tubes vs parents of kids with tubes - there are probably about a dozen people on there whose kids have a GJ tube for the same reasons that they're looking at Mason having one. You have to wade through a moderate amount of sappy American crap but that notwithstanding, it's probably the best source of peer support and info I can think of. They also have equipment exchanges and regular listings of people selling useful gadgets and stuff like tummy bands to protect the stoma for kids who are at risk of pulling on it or getting it caught... bit of a goldmine information wise, really.
Oh and yep, my PEG is a very ordinary one of these, which I'm stuck with now so replacement under GA when needed as apparently my tract is too long for any other sort
- serves me right for having a belly, basically.
I'm so sorry that Mason's not doing well with his PEG - rotten luck, really. These issues can be grown out of with time - the trick is getting them to do the growing with all that puking going on! Which is where the tube comes in.
I have a few friends with a GJ tube (as they're known in the trade as they usually use the same hole as for the PEG but then go through the valve into the jejunum) and know a few more with littl'uns with one.
It has a few potential downsides, I'm sure you've already discovered those - the biggest one being if it comes out you'll need it putting back with the help of a radiographer to make sure it's in the right place, which can be a royal pain in the bum for someone with an active kid who yanks on it regularly (hopefully Mason is not one of these - argh!).
If you are comfortable on Facebook, there's a 'feeding tube awareness' group on there that has a HUGE amount of really valuable information-sharing and such with about a 1:9 ratio of people with tubes vs parents of kids with tubes - there are probably about a dozen people on there whose kids have a GJ tube for the same reasons that they're looking at Mason having one. You have to wade through a moderate amount of sappy American crap but that notwithstanding, it's probably the best source of peer support and info I can think of. They also have equipment exchanges and regular listings of people selling useful gadgets and stuff like tummy bands to protect the stoma for kids who are at risk of pulling on it or getting it caught... bit of a goldmine information wise, really.
Oh and yep, my PEG is a very ordinary one of these, which I'm stuck with now so replacement under GA when needed as apparently my tract is too long for any other sort
- serves me right for having a belly, basically.I knew you'd know something.
That's the same PEG Mason has. He's certainly not active - in fact still classified quadriplegic - but he does manage to give it a yank occasionally. He manages to get the valve on the gibbons between his toes and then stretches.
I will get on the FB group and have a look around.
Thanks
That's the same PEG Mason has. He's certainly not active - in fact still classified quadriplegic - but he does manage to give it a yank occasionally. He manages to get the valve on the gibbons between his toes and then stretches.
I will get on the FB group and have a look around.
Thanks
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