#1
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charlie is peg fed and has been now for 12 months, he was ment to have this changed to a mickey button at new year but he got swine flu and it got cancelled, but heard nothing since?? but his tube now is just manky it looks awful and hes constantly gettin infected and nothin seems to get rid of it anti-biotics/dressings just dnt work but if he has a mickey button is this gunna b any diff?? hes recently discovered his peg and sticks his fingers in it and it goes thru me wen he does Sad

now what i need advice on is is a peg better then a button or the other way round or is it the same?? i hate how much meds hes been put on n taken off i hate him having unnessacerry procidures so do i go for the button or stay with the peg but how long can the peg stay in is it not just un-hygenic having the same tube for so long???

i appollogise for my spellings today xx

bec xx
Heart my 2 boys so much
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Hi,
I can't really help you with your question but I actually wanted some advice from people. Owen has three lots of epiliepsy meds twice a day and at the moment he is orally fed. He absolutely loves his food and can get very vocal and enjoys everything associated with food. Unfortunately Owen's mum is struggling giving him his meds and feels he would benefit from a gastrostomy. I have done some research and contacted his community team in the community but my wife and I feel that if Owen does get the feeding tube then his quality life would decrease and he would lose his ability to eat, drink and even vocalise.
Can anybody help me with some real advice on what the procedure entails and what life is like for their child. It would be nice to get some answer from people that are living it rather than the textbooks!!
many thanks
#3
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(03-26-2011, 01:50 PM)rclifford1974 Wrote: Hi,
I can't really help you with your question but I actually wanted some advice from people. Owen has three lots of epiliepsy meds twice a day and at the moment he is orally fed. He absolutely loves his food and can get very vocal and enjoys everything associated with food. Unfortunately Owen's mum is struggling giving him his meds and feels he would benefit from a gastrostomy. I have done some research and contacted his community team in the community but my wife and I feel that if Owen does get the feeding tube then his quality life would decrease and he would lose his ability to eat, drink and even vocalise.
Can anybody help me with some real advice on what the procedure entails and what life is like for their child. It would be nice to get some answer from people that are living it rather than the textbooks!!
many thanks


my son has had a gastrostomy for 12 months and i wouldnt say his quality of life is not as good as others his age, but in my opinion i wouldnt have a gastrostomy for charlie unless it was REALLY needed yes it is easier to get meds down him but the amount of infections he gets and trouble he has with it just isnt worth it. are his meds in tablet form or liquid??
Heart my 2 boys so much
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[quote='becncharlie' pid='28197' dateline='1301143580']
charlie is peg fed and has been now for 12 months, he was ment to have this changed to a mickey button at new year but he got swine flu and it got cancelled, but heard nothing since?? but his tube now is just manky it looks awful and hes constantly gettin infected and nothin seems to get rid of it anti-biotics/dressings just dnt work but if he has a mickey button is this gunna b any diff?? hes recently discovered his peg and sticks his fingers in it and it goes thru me wen he does Sad

now what i need advice on is is a peg better then a button or the other way round or is it the same?? i hate how much meds hes been put on n taken off i hate him having unnessacerry procidures so do i go for the button or stay with the peg but how long can the peg stay in is it not just un-hygenic having the same tube for so long???

i appollogise for my spellings today xx

bec xx


Hi, my son has a mickey and i find it much more discrete and tidier than a long tube. it is easy to keep clean, never had more than a little redness once or twice right at the beginning 3 yrs ago! i change it about every six months real easy to do community nurses can do it if you prefare. the procedure to change it was straight forward and quick he was given a little gas and air, he had a feed shortly afterwards and we came home. in my experience the button is loads better hope this helps.
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(03-26-2011, 01:59 PM)becncharlie Wrote:
(03-26-2011, 01:50 PM)rclifford1974 Wrote: Hi,
I can't really help you with your question but I actually wanted some advice from people. Owen has three lots of epiliepsy meds twice a day and at the moment he is orally fed. He absolutely loves his food and can get very vocal and enjoys everything associated with food. Unfortunately Owen's mum is struggling giving him his meds and feels he would benefit from a gastrostomy. I have done some research and contacted his community team in the community but my wife and I feel that if Owen does get the feeding tube then his quality life would decrease and he would lose his ability to eat, drink and even vocalise.
Can anybody help me with some real advice on what the procedure entails and what life is like for their child. It would be nice to get some answer from people that are living it rather than the textbooks!!
many thanks


my son has had a gastrostomy for 12 months and i wouldnt say his quality of life is not as good as others his age, but in my opinion i wouldnt have a gastrostomy for charlie unless it was REALLY needed yes it is easier to get meds down him but the amount of infections he gets and trouble he has with it just isnt worth it. are his meds in tablet form or liquid??


Hi, thanks for getting back. He has two liquid ones and then 1 tablet but we do have to put the tablet in water to dissolve. We aren't really having any problems with him taking them but he does fight them now and again but what child does like taking meds Smile He is just eating so well and he loves his food. Just feel like everyone is really pushing for it. Has your son's personality changed at all ? can he still do the same things as before i.e laughing and smiling? My wife and I know that if they do fit one which they are saying would be just for his meds and top-up foods for when he is poorly - his mum would find it the easier option and want to give him all his meals. It is just so stressful at the moment - it's bad enough that he has been in hospital all week after a seizure and now we are faced with this.



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