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is,

Like Makenna, Jack has had a Mic-key button for the last 6yrs. He had a PEG

before that.

He has never had any problems with the button and his skin has never broken

down.

It's really easy to change at home and Jack is great about having it done.

He was a bit anxious at first (as I was !!! ) but once he realised that it

didn't hurt he was fine.

It's great not to have the g-tube dangling about all the time and getting

tangled especially once they are mobile.

Whatever you decide it'll be the right decision for .

Hugs

Elaine mum to Elise(13yrs) & Jack(8yrs) CHaRGE

Scotland

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is,

My daughter, Makenna has a button. She is five years old and has

had it since around age 18months. She had a regular g-tube and a GJ

tube prior to the button. I have found the button wonderful.

Makenna's needs replaced every six months or so. We have gone as

long as one year but i don't recommend that. SHe is a little scared

of having it changed, but I think she thinks of it as part of her.

She cries a bit when we change it but is fine immediately

afterward. We have had no problem with inflammation, infection or

granulation tissue. As for having to undress her to feed her that

also is not an issue. We usually have her in two piece outfit so the

nurse at school just lift up her shirt a bit to put the tube

extensionin and then the shirt is back down. The hardest is when

she wears long dresses. We usually just put her back to others or

time her feedings to be done in private. I am a fan of the button.

Good luck with your decision.

, mom to Makenna 5

>

> Hi all,

>

> I have something I need to put to the collective wisdom of the

group.

>

> has a PEG tube due to aspiration. It is the kind which has

to be put

> in under GA, as is done endoscopically.

> It is a dangly tube. It will have been in place for 2 years this

June. We

> have never had any issues with it at all. He does not have a

fundo.

>

> At the time it was placed the nurses told us that after 18m to 2

yrs it

> would need to be changed to a Mickey or similar type button. The

reasons

> given was that it is better for child's self image to no longer

have dangly

> tube and the button is easier to hide, flush to the skin. Also

the button

> does not need GA every two years but can remain in place

indefinitely, you

> just change the balloon which hold it in place.

>

> I can see the advantage off not having the dangly peg which I fear

might get

> pulled on something now is getting very active. But now

that the time

> for this switch over is drawing near I have been asking other UK

parents on

> various forum's how they find the button. I am alarmed by what I

am hearing,

> stories of inflammation, granulation tissue, repeated infections,

children

> needing sedation for button changes etc... is very frightened

on

> doctors interventions , it is a struggle to even get him to let

them listen

> to his chest. He will not let us touch the site of the stoma at

all, so I

> think changing the balloon will be a pin him down and forceably

hold him

> occassion. Is it worth it? Or would we be best to ask to tick

with the PEG

> which has given us no issues and have a bi-annual GA?

>

> Some parents tell me that they switched back to the PEG after

trying

> the button and finding it was a nightmare...but to have an

operation to take

> it out and then a second to put it back seems terrible to me.

Others have

> said they prefered the PEG as it could dangle inside trousers and

then be

> put outside the clothes at feed time and there was no need for

carer's

> / teaching assistants etc to actually undress the child to get to

a button

> underneath a top/vest etc..so it was actually more dignified for

the child

> than a mickey button.

>

> I need to know how you all have found the button.......Most of the

parents I

> have asked, their children have cp or other disabilities, so I

need to know

> from the Charge Perspective...!!

>

> Thanks in advance

> is

>

>

>

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is,

My daughter, Makenna has a button. She is five years old and has

had it since around age 18months. She had a regular g-tube and a GJ

tube prior to the button. I have found the button wonderful.

Makenna's needs replaced every six months or so. We have gone as

long as one year but i don't recommend that. SHe is a little scared

of having it changed, but I think she thinks of it as part of her.

She cries a bit when we change it but is fine immediately

afterward. We have had no problem with inflammation, infection or

granulation tissue. As for having to undress her to feed her that

also is not an issue. We usually have her in two piece outfit so the

nurse at school just lift up her shirt a bit to put the tube

extensionin and then the shirt is back down. The hardest is when

she wears long dresses. We usually just put her back to others or

time her feedings to be done in private. I am a fan of the button.

Good luck with your decision.

, mom to Makenna 5

>

> Hi all,

>

> I have something I need to put to the collective wisdom of the

group.

>

> has a PEG tube due to aspiration. It is the kind which has

to be put

> in under GA, as is done endoscopically.

> It is a dangly tube. It will have been in place for 2 years this

June. We

> have never had any issues with it at all. He does not have a

fundo.

>

> At the time it was placed the nurses told us that after 18m to 2

yrs it

> would need to be changed to a Mickey or similar type button. The

reasons

> given was that it is better for child's self image to no longer

have dangly

> tube and the button is easier to hide, flush to the skin. Also

the button

> does not need GA every two years but can remain in place

indefinitely, you

> just change the balloon which hold it in place.

>

> I can see the advantage off not having the dangly peg which I fear

might get

> pulled on something now is getting very active. But now

that the time

> for this switch over is drawing near I have been asking other UK

parents on

> various forum's how they find the button. I am alarmed by what I

am hearing,

> stories of inflammation, granulation tissue, repeated infections,

children

> needing sedation for button changes etc... is very frightened

on

> doctors interventions , it is a struggle to even get him to let

them listen

> to his chest. He will not let us touch the site of the stoma at

all, so I

> think changing the balloon will be a pin him down and forceably

hold him

> occassion. Is it worth it? Or would we be best to ask to tick

with the PEG

> which has given us no issues and have a bi-annual GA?

>

> Some parents tell me that they switched back to the PEG after

trying

> the button and finding it was a nightmare...but to have an

operation to take

> it out and then a second to put it back seems terrible to me.

Others have

> said they prefered the PEG as it could dangle inside trousers and

then be

> put outside the clothes at feed time and there was no need for

carer's

> / teaching assistants etc to actually undress the child to get to

a button

> underneath a top/vest etc..so it was actually more dignified for

the child

> than a mickey button.

>

> I need to know how you all have found the button.......Most of the

parents I

> have asked, their children have cp or other disabilities, so I

need to know

> from the Charge Perspective...!!

>

> Thanks in advance

> is

>

>

>

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Thanks , that's really useful. I was hoping to hear some good news

about the button as all the nurses seemed to think it was the way to go. Do

you change it yourself or does a nurse do that?

The other thing I wanted to ask was do you cover it with a dressing or pad

or is it literally just under her shirt.

Thanks,

is

>

> is,

>

> My daughter, Makenna has a button. She is five years old and has

> had it since around age 18months. She had a regular g-tube and a GJ

> tube prior to the button. I have found the button wonderful.

> Makenna's needs replaced every six months or so. We have gone as

> long as one year but i don't recommend that. SHe is a little scared

> of having it changed, but I think she thinks of it as part of her.

> She cries a bit when we change it but is fine immediately

> afterward. We have had no problem with inflammation, infection or

> granulation tissue. As for having to undress her to feed her that

> also is not an issue. We usually have her in two piece outfit so the

> nurse at school just lift up her shirt a bit to put the tube

> extensionin and then the shirt is back down. The hardest is when

> she wears long dresses. We usually just put her back to others or

> time her feedings to be done in private. I am a fan of the button.

> Good luck with your decision.

>

> , mom to Makenna 5

>

>

>

> >

> > Hi all,

> >

> > I have something I need to put to the collective wisdom of the

> group.

> >

> > has a PEG tube due to aspiration. It is the kind which has

> to be put

> > in under GA, as is done endoscopically.

> > It is a dangly tube. It will have been in place for 2 years this

> June. We

> > have never had any issues with it at all. He does not have a

> fundo.

> >

> > At the time it was placed the nurses told us that after 18m to 2

> yrs it

> > would need to be changed to a Mickey or similar type button. The

> reasons

> > given was that it is better for child's self image to no longer

> have dangly

> > tube and the button is easier to hide, flush to the skin. Also

> the button

> > does not need GA every two years but can remain in place

> indefinitely, you

> > just change the balloon which hold it in place.

> >

> > I can see the advantage off not having the dangly peg which I fear

> might get

> > pulled on something now is getting very active. But now

> that the time

> > for this switch over is drawing near I have been asking other UK

> parents on

> > various forum's how they find the button. I am alarmed by what I

> am hearing,

> > stories of inflammation, granulation tissue, repeated infections,

> children

> > needing sedation for button changes etc... is very frightened

> on

> > doctors interventions , it is a struggle to even get him to let

> them listen

> > to his chest. He will not let us touch the site of the stoma at

> all, so I

> > think changing the balloon will be a pin him down and forceably

> hold him

> > occassion. Is it worth it? Or would we be best to ask to tick

> with the PEG

> > which has given us no issues and have a bi-annual GA?

> >

> > Some parents tell me that they switched back to the PEG after

> trying

> > the button and finding it was a nightmare...but to have an

> operation to take

> > it out and then a second to put it back seems terrible to me.

> Others have

> > said they prefered the PEG as it could dangle inside trousers and

> then be

> > put outside the clothes at feed time and there was no need for

> carer's

> > / teaching assistants etc to actually undress the child to get to

> a button

> > underneath a top/vest etc..so it was actually more dignified for

> the child

> > than a mickey button.

> >

> > I need to know how you all have found the button.......Most of the

> parents I

> > have asked, their children have cp or other disabilities, so I

> need to know

> > from the Charge Perspective...!!

> >

> > Thanks in advance

> > is

> >

> >

> >

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is,

Our son has a " mini button " .

He has had it for at least 10-13 months with very minimal problems. We only

have positive things to say about our experience with it. Of course with

any new thing it takes a little time to get use to, but changing it was no

problem once we did it once or twice. Overall, I like it better than the

" dangly

tube " (which initially had) in that it was less likely to be tugged

out as our son became more active.

Good luck in whatever you decide!

(mom to two great children, 22 months (CHARGE), 5 1/2)

-- Original Message -----

To: <CHARGE >

Sent: Saturday, February 18, 2006 3:31 PM

Subject: Peg to Button?

> Hi all,

>

> I have something I need to put to the collective wisdom of the group.

>

> has a PEG tube due to aspiration. It is the kind which has to be

> put

> in under GA, as is done endoscopically.

> It is a dangly tube. It will have been in place for 2 years this June. We

> have never had any issues with it at all. He does not have a fundo.

>

> At the time it was placed the nurses told us that after 18m to 2 yrs it

> would need to be changed to a Mickey or similar type button. The reasons

> given was that it is better for child's self image to no longer have

> dangly

> tube and the button is easier to hide, flush to the skin. Also the button

> does not need GA every two years but can remain in place indefinitely, you

> just change the balloon which hold it in place.

>

> I can see the advantage off not having the dangly peg which I fear might

> get

> pulled on something now is getting very active. But now that the

> time

> for this switch over is drawing near I have been asking other UK parents

> on

> various forum's how they find the button. I am alarmed by what I am

> hearing,

> stories of inflammation, granulation tissue, repeated infections, children

> needing sedation for button changes etc... is very frightened on

> doctors interventions , it is a struggle to even get him to let them

> listen

> to his chest. He will not let us touch the site of the stoma at all, so I

> think changing the balloon will be a pin him down and forceably hold him

> occassion. Is it worth it? Or would we be best to ask to tick with the

> PEG

> which has given us no issues and have a bi-annual GA?

>

> Some parents tell me that they switched back to the PEG after trying

> the button and finding it was a nightmare...but to have an operation to

> take

> it out and then a second to put it back seems terrible to me. Others have

> said they prefered the PEG as it could dangle inside trousers and then be

> put outside the clothes at feed time and there was no need for carer's

> / teaching assistants etc to actually undress the child to get to a button

> underneath a top/vest etc..so it was actually more dignified for the child

> than a mickey button.

>

> I need to know how you all have found the button.......Most of the parents

> I

> have asked, their children have cp or other disabilities, so I need to

> know

> from the Charge Perspective...!!

>

> Thanks in advance

> is

>

>

>

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is,

We change the button at home ourselves. It is really easy and either

of us (jay or I) can do it all by ourselves. We used to keep a

dressing under it to protect her skin from any leaking, but we don't

now. It doesn't leak unless the balloon needs some water. It is

lierally right under her shirt, flush with the skin. It just has a

port to put water in the balloon and a port for the extensions. You

can't even see it under her clothes, except for swimsuit and

leotards.

, mom to makenna

> > >

> > > Hi all,

> > >

> > > I have something I need to put to the collective wisdom of the

> > group.

> > >

> > > has a PEG tube due to aspiration. It is the kind which

has

> > to be put

> > > in under GA, as is done endoscopically.

> > > It is a dangly tube. It will have been in place for 2 years

this

> > June. We

> > > have never had any issues with it at all. He does not have a

> > fundo.

> > >

> > > At the time it was placed the nurses told us that after 18m to

2

> > yrs it

> > > would need to be changed to a Mickey or similar type button.

The

> > reasons

> > > given was that it is better for child's self image to no longer

> > have dangly

> > > tube and the button is easier to hide, flush to the skin. Also

> > the button

> > > does not need GA every two years but can remain in place

> > indefinitely, you

> > > just change the balloon which hold it in place.

> > >

> > > I can see the advantage off not having the dangly peg which I

fear

> > might get

> > > pulled on something now is getting very active. But now

> > that the time

> > > for this switch over is drawing near I have been asking other

UK

> > parents on

> > > various forum's how they find the button. I am alarmed by what

I

> > am hearing,

> > > stories of inflammation, granulation tissue, repeated

infections,

> > children

> > > needing sedation for button changes etc... is very

frightened

> > on

> > > doctors interventions , it is a struggle to even get him to let

> > them listen

> > > to his chest. He will not let us touch the site of the stoma

at

> > all, so I

> > > think changing the balloon will be a pin him down and forceably

> > hold him

> > > occassion. Is it worth it? Or would we be best to ask to tick

> > with the PEG

> > > which has given us no issues and have a bi-annual GA?

> > >

> > > Some parents tell me that they switched back to the PEG after

> > trying

> > > the button and finding it was a nightmare...but to have an

> > operation to take

> > > it out and then a second to put it back seems terrible to me.

> > Others have

> > > said they prefered the PEG as it could dangle inside trousers

and

> > then be

> > > put outside the clothes at feed time and there was no need for

> > carer's

> > > / teaching assistants etc to actually undress the child to get

to

> > a button

> > > underneath a top/vest etc..so it was actually more dignified

for

> > the child

> > > than a mickey button.

> > >

> > > I need to know how you all have found the button.......Most of

the

> > parents I

> > > have asked, their children have cp or other disabilities, so I

> > need to know

> > > from the Charge Perspective...!!

> > >

> > > Thanks in advance

> > > is

> > >

> > >

> > >

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Dear is-

Firstly- congratulations on 's walk and his precious " OOOOOOOOOOO-PEN " !

:o)

On to the Mic-Key. started with a foley catheter as a g-tube. It had

a rather long dangly bit that I used to wrap into the loops of his

diapers/nappies. Because the tube tended to lean and pull, he used to have

some redness and drainage around the stoma site. He started with the

Mic-Key when he was 3, and has had one now for thirteen years (not the same

one - lol!) They are really easy to change yourself (actually has

been doing it himself now for quite some time). They can be quite durable.

Since changing to the Mic-Key we have had absolutely no troubles with the

stoma except for when enters the coughing part of a cold - I think the

coughing puts pressure on the stoma and more stomach acids leak and cause

excoriation....

They are truly " low profile " and it was nice not to have the dangly bit on

him anymore.

Hope this helps-

and congratulations again! :o)

best-

yuka

Peg to Button?

> Hi all,

>

> I have something I need to put to the collective wisdom of the group.

>

> has a PEG tube due to aspiration. It is the kind which has to be

put

> in under GA, as is done endoscopically.

> It is a dangly tube. It will have been in place for 2 years this June. We

> have never had any issues with it at all. He does not have a fundo.

>

> At the time it was placed the nurses told us that after 18m to 2 yrs it

> would need to be changed to a Mickey or similar type button. The reasons

> given was that it is better for child's self image to no longer have

dangly

> tube and the button is easier to hide, flush to the skin. Also the button

> does not need GA every two years but can remain in place indefinitely, you

> just change the balloon which hold it in place.

>

> I can see the advantage off not having the dangly peg which I fear might

get

> pulled on something now is getting very active. But now that the

time

> for this switch over is drawing near I have been asking other UK parents

on

> various forum's how they find the button. I am alarmed by what I am

hearing,

> stories of inflammation, granulation tissue, repeated infections, children

> needing sedation for button changes etc... is very frightened on

> doctors interventions , it is a struggle to even get him to let them

listen

> to his chest. He will not let us touch the site of the stoma at all, so I

> think changing the balloon will be a pin him down and forcibly hold him

> occasion. Is it worth it? Or would we be best to ask to tick with the PEG

> which has given us no issues and have a bi-annual GA?

>

> Some parents tell me that they switched back to the PEG after trying

> the button and finding it was a nightmare...but to have an operation to

take

> it out and then a second to put it back seems terrible to me. Others have

> said they preferred the PEG as it could dangle inside trousers and then be

> put outside the clothes at feed time and there was no need for carer's

> / teaching assistants etc to actually undress the child to get to a button

> underneath a top/vest etc..so it was actually more dignified for the child

> than a mickey button.

>

> I need to know how you all have found the button.......Most of the parents

I

> have asked, their children have cp or other disabilities, so I need to

know

> from the Charge Perspective...!!

>

> Thanks in advance

> is

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yuka ur right bout the coughing thing if i talk when im having my meds itll

all c ome back up

>

> Dear is-

>

> Firstly- congratulations on 's walk and his precious

> " OOOOOOOOOOO-PEN " !

> :o)

>

> On to the Mic-Key. started with a foley catheter as a g-tube. It

> had

> a rather long dangly bit that I used to wrap into the loops of his

> diapers/nappies. Because the tube tended to lean and pull, he used to

> have

> some redness and drainage around the stoma site. He started with the

> Mic-Key when he was 3, and has had one now for thirteen years (not the

> same

> one - lol!) They are really easy to change yourself (actually has

> been doing it himself now for quite some time). They can be quite

> durable.

> Since changing to the Mic-Key we have had absolutely no troubles with the

> stoma except for when enters the coughing part of a cold - I think

> the

> coughing puts pressure on the stoma and more stomach acids leak and cause

> excoriation....

>

> They are truly " low profile " and it was nice not to have the dangly bit on

> him anymore.

>

> Hope this helps-

> and congratulations again! :o)

>

> best-

>

> yuka

>

> Peg to Button?

>

>

> > Hi all,

> >

> > I have something I need to put to the collective wisdom of the group.

> >

> > has a PEG tube due to aspiration. It is the kind which has to be

> put

> > in under GA, as is done endoscopically.

> > It is a dangly tube. It will have been in place for 2 years this

> June. We

> > have never had any issues with it at all. He does not have a fundo.

> >

> > At the time it was placed the nurses told us that after 18m to 2 yrs it

> > would need to be changed to a Mickey or similar type button. The reasons

> > given was that it is better for child's self image to no longer have

> dangly

> > tube and the button is easier to hide, flush to the skin. Also the

> button

> > does not need GA every two years but can remain in place indefinitely,

> you

> > just change the balloon which hold it in place.

> >

> > I can see the advantage off not having the dangly peg which I fear might

> get

> > pulled on something now is getting very active. But now that the

> time

> > for this switch over is drawing near I have been asking other UK parents

> on

> > various forum's how they find the button. I am alarmed by what I am

> hearing,

> > stories of inflammation, granulation tissue, repeated infections,

> children

> > needing sedation for button changes etc... is very frightened on

> > doctors interventions , it is a struggle to even get him to let them

> listen

> > to his chest. He will not let us touch the site of the stoma at all, so

> I

> > think changing the balloon will be a pin him down and forcibly hold him

> > occasion. Is it worth it? Or would we be best to ask to tick with the

> PEG

> > which has given us no issues and have a bi-annual GA?

> >

> > Some parents tell me that they switched back to the PEG after trying

> > the button and finding it was a nightmare...but to have an operation to

> take

> > it out and then a second to put it back seems terrible to me. Others

> have

> > said they preferred the PEG as it could dangle inside trousers and then

> be

> > put outside the clothes at feed time and there was no need for carer's

> > / teaching assistants etc to actually undress the child to get to a

> button

> > underneath a top/vest etc..so it was actually more dignified for the

> child

> > than a mickey button.

> >

> > I need to know how you all have found the button.......Most of the

> parents

> I

> > have asked, their children have cp or other disabilities, so I need to

> know

> > from the Charge Perspective...!!

> >

> > Thanks in advance

> > is

>

>

>

> CHARGE SYNDROME LISTSERV PHOTO PAGE:

> http://www.imagestation.com/album/?id=2117043995

>

> Membership of this email support groups does not constitute membership in

> the CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter),

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org

> (CHARGE Syndrome Canada - http://www.chargesyndrome.ca)

>

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

> www.chargesyndrome.org or by calling 1-.

>

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We love the button - we've had some kinds that leak that we didn't like (BARD) -

but everyone's experience is different. Overall, we LOVE the tube being gone

and the button. I feed a student who has a button and Kennedy has a button and

nobody lifts their shirts up or undresses them to put the tube in, it's very

discreet under the bottom part of their shirt. If someone is lifting a shirt

all the way up or undressing them at all to put a tube in, they do NOT need to

be whatsoever.

We had more granulation tissue, etc with the tube - NONE with the button

whatsoever. It's not bad changing it at all, especially once you get used to it.

Some buttons Kennedy has had have lasted over a year. I feel that to avoid

anesthetic at ANY cost is worth it for Kennedy so the fact we don't need to be

" put out " to change a button anymore is wonderful.

Weir

Home: lisaweir@...

Work: lisa.weir@...

Phone:

Web: http://ca.geocities.com/weirfamilyrogers

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Thanks to everyone who replied with tube/Button stories, all really useful

to us as we work out what to do next.

is (Mum to , 2, UK)

>

> We love the button - we've had some kinds that leak that we didn't like

> (BARD) - but everyone's experience is different. Overall, we LOVE the tube

> being gone and the button. I feed a student who has a button and Kennedy

> has a button and nobody lifts their shirts up or undresses them to put the

> tube in, it's very discreet under the bottom part of their shirt. If

> someone is lifting a shirt all the way up or undressing them at all to put

> a tube in, they do NOT need to be whatsoever.

>

> We had more granulation tissue, etc with the tube - NONE with the button

> whatsoever. It's not bad changing it at all, especially once you get used to

> it. Some buttons Kennedy has had have lasted over a year. I feel that to

> avoid anesthetic at ANY cost is worth it for Kennedy so the fact we don't

> need to be " put out " to change a button anymore is wonderful.

>

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> Weir

> Home: lisaweir@...

> Work: lisa.weir@...

> Phone:

> Web: http://ca.geocities.com/weirfamilyrogers

>

>

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>

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is,

I worked in a pediatric hospital for several years when buttons were rather

new. There were many problems with getting the right fit, with them leaking

and causing problems. (That was in the mid 80's) When Dylan needed a

g-tube I kept his foley catheter typed tube for nearly 2 years, due to these

concerns. Finally we switched to the button. It truly is a part of him,

his reaction to a doll that had a button like him was priceless by the way -

and that was just recently.

The Mic-Key buttons can leak if the valve is damaged and should not leak

around the site if there is a proper fit. Dylan has not had problems with

granulations of his skin with either type.

Fortunately since his foley catheter tube was put in during his

fundoplication we did not have to make the decision to have surgery to

change the type of tube/button.

As far as GA - I am extreme at avoiding GA - The impact to Dylan's nervous

system is apparent for months! I keep putting off having his second

testicle brought down, because we keep planning on combining with other

things, but somehow he keeps making it through without any other surgeries

needed, so here we are 5 years later and still have not done it.

Kim

> Hi all,

>

> I have something I need to put to the collective wisdom of the group.

>

> has a PEG tube due to aspiration. It is the kind which has to be put

> in under GA, as is done endoscopically.

> It is a dangly tube. It will have been in place for 2 years this June. We

> have never had any issues with it at all. He does not have a fundo.

>

> At the time it was placed the nurses told us that after 18m to 2 yrs it

> would need to be changed to a Mickey or similar type button. The reasons

> given was that it is better for child's self image to no longer have dangly

> tube and the button is easier to hide, flush to the skin. Also the button

> does not need GA every two years but can remain in place indefinitely, you

> just change the balloon which hold it in place.

>

> I can see the advantage off not having the dangly peg which I fear might get

> pulled on something now is getting very active. But now that the time

> for this switch over is drawing near I have been asking other UK parents on

> various forum's how they find the button. I am alarmed by what I am hearing,

> stories of inflammation, granulation tissue, repeated infections, children

> needing sedation for button changes etc... is very frightened on

> doctors interventions , it is a struggle to even get him to let them listen

> to his chest. He will not let us touch the site of the stoma at all, so I

> think changing the balloon will be a pin him down and forceably hold him

> occassion. Is it worth it? Or would we be best to ask to tick with the PEG

> which has given us no issues and have a bi-annual GA?

>

> Some parents tell me that they switched back to the PEG after trying

> the button and finding it was a nightmare...but to have an operation to take

> it out and then a second to put it back seems terrible to me. Others have

> said they prefered the PEG as it could dangle inside trousers and then be

> put outside the clothes at feed time and there was no need for carer's

> / teaching assistants etc to actually undress the child to get to a button

> underneath a top/vest etc..so it was actually more dignified for the child

> than a mickey button.

>

> I need to know how you all have found the button.......Most of the parents I

> have asked, their children have cp or other disabilities, so I need to know

> from the Charge Perspective...!!

>

> Thanks in advance

> is

>

>

>

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