Re: Re: Nissan fundoplication ?'s

[Guest guest]

Hi,

My just got her G-tube in November - Her pediatricians were pushing

us for almost a year to do it and we resisted - only because she had had a

NG-tube (same thing but thru her nose) at one point and we just started

bollus feeds (alot all at once) and all she did was stop eating and start

vomitting. We resisted the G-tube because of our NG tube experience and was

very frustrated that we weren't told more about it and how it works until we

finally decided to try it! - all I can say now, in hindsight is I WISH WE

WOULD HAVE DONE IT SOONER!! We began to see improvements in her strength

immediately and also started to look almost chubby (comparitively speaking)!

As for the fundoplication, if your doesn't vomit, she probably

doesn't need that part of it. To put it simply, the fundo is a " stomach wrap "

which helps keep everything down. They did a " swallow study " on Jes to make

sure she didn't have any reflux - sometimes they can have reflux and not even

know it because it may not come all the way up and out. A swallow study is

pretty simple, they make her swallow liquid, then do some sort of an x-ray

and make sure it's all going where it should be. -Not fun for the kids

though, cuz they have to be restrained. All I can say is, if you decide to do

it - start her feedings SLOW, especially if you are doing them at night. Jes

has a hard time with her night feeds, she was vomitting almost every morning,

so we had to turn them down. It seems like common sense to me - at night,

your body can't possibly digest much since you're so inactive. Her Dr's are

pushing us way too much to get her feeds up higher, I think. So, also if and

when you do it, go with you're best judgement too, I think our problem is

that we don't have any diagnoses on her yet, so they are treating her like a

normal 2 yr old - I seriously think they want to see her weighing 20 lbs

right now! Sorry for rambling - I think I've had all this bottled up for a

while, but hope I've helped anyway!

, Mom to (22 mos RSS?) , (4 1/2)

[Guest guest]

Hi!

Yes, my son, , has a g-tube and didn't get the Fundo. He was tested with a

PH Probe over a 24 hour span to see how bad his reflux was. It was slightly

there, but not bad enough to have a Fundo.. After the g-tube surgery it is

sometimes common for the reflux to return, which 's did for only about 2

months. We controlled it with medicine and he has been totally fine for a year

now and with no reflux. We were somewhat reluctant about the Fundo because they

are unable to throw up and it just seemed more of a problem to deal with and

since 's reflux wasn't bad, we didn't have to do it.

I don't want to bore other people with 's g-tube story, so if you want me to

email you directly as to what and how it all happened, I will. Just let me

know. By the way, we do NOT regret one single moment that we got the g-tube.

It

has been WONDERFUL and not a nuisance or problem. leads a normal active

life for a 3 year old and does anything other kids his age can do. He swims,

climbs, plays, runs, crawls, lays on his stomach, and the whole nine yards!!!

We don't " drip " feed our son like you will your daughter at night so that is

something I couldn't help you with, but anything else I think I can. I know

this

is a scary thing to think about, but " really " , it's not bad.

Good luck!

Stacie

and 's mommy

[Guest guest]

- my daughter tte was 3 yrs old when she got her g-tube for night

feeds only. She does eat during the day. This was one of the best decisions

we made. It Really does take the frustration out of meal time. I encourage

her to eat during the day- but if it is a bad day, atleast I know she will

get her calories at night.

Just my .02

[Guest guest]

,

Perhaps I am not the best person to answer your question, but I will give my

opinion and you can take it for what it is worth. What I mean is that

having the button was not the problem. Getting rid of the " hole " is.

Okay, here goes....having the g-tube/button is fairly easy. There is a

hospital stay of a few days to give healing a chance and to regulate the

feedings and how much your child can handle at what rate. But in the scheme

of things, it feels awful to anticipate and go through, but it doesn't turn

out as bad as you think. Once you adjust to the pump and its

idiosynchrasies(sp?), the pressure is off you. You and your daughter will

be able to sleep through the night!!!! You won't have to worry about oral

intake as much! Your daughter will begin to gain weight and grow a little

bit and be ready for the gh shots! (But remember you have to consider

traveling with the pump and cans of formula and other supplies, too. We

used to FedEx supplies ahead of our arrival - lighter suitcases that way.)

I would just strongly recommend one thing to you and anyone else out there

to further examine what happens when the button comes out. As many of you

know, Max had his in for 8 years, and now that we have pulled it, the hole

is not closed up. It has been seven months. He will probably need surgery,

which maybe we could have avoided if we had thought to ask more questions

when we did it initially. We were told that it would heal up by itself, and

it did not. Other people on this list told me that they were told it might

need a stitch or two to hold together until it does heal. We were not told

that and now we face something more involved. That is why I love this list.

We learn so much from each other!

Jodi

Re: Nissan fundoplication ?'s

> From: Lequiz@...

>

> Hi,

> My question is for any parent that has a RSS child that was, or is

> currently, Gtube fed.

>

> Did your child also get a Nissan Fundoplication? What type of testing

> was done to see if reflux would be a problem? Did they get the Nissan at

the

> same time as the Gtube? Would you do it all again?

>

> Our daughter is healthy, active, social, talkative and medicine free!

> She has been tested to be cognitively ahead by as much as a year, with

gross

> motor skill delays of about 6 months. She is very much the typical

toddler;

> she eats a small variety of foods (all fattening ones thank goodness) but

in

> pretty small portions. We did try Periactin, but it did not work

positively

> for her. We still bottle feed her formula in the middle of the night

> proactively in case of hypoglycemia.

>

> It has been recommended to do the Gtube and nighttime feedings to

> increase her weight and height. For growth and in preparation for GH.

Any

> information and experience you could share on this subject would be so

> greatly appreciated by this confused and afraid-to-make-the-wrong-decision

> couple.

>

> and Steve

> (Parents to - RSS, 23 months, 15 1/2 lbs, 29 inches)

>

> ---------------------------

[Guest guest]

Ramble away girl we all do from time to time.

Danna

Re: Re: Nissan fundoplication ?'s

> From: Jenwali848@...

>

> Hi,

> My just got her G-tube in November - Her pediatricians were

pushing

> us for almost a year to do it and we resisted - only because she had had a

> NG-tube (same thing but thru her nose) at one point and we just started

> bollus feeds (alot all at once) and all she did was stop eating and start

> vomitting. We resisted the G-tube because of our NG tube experience and

was

> very frustrated that we weren't told more about it and how it works until

we

> finally decided to try it! - all I can say now, in hindsight is I WISH WE

> WOULD HAVE DONE IT SOONER!! We began to see improvements in her strength

> immediately and also started to look almost chubby (comparitively

speaking)!

> As for the fundoplication, if your doesn't vomit, she probably

> doesn't need that part of it. To put it simply, the fundo is a " stomach

wrap "

> which helps keep everything down. They did a " swallow study " on Jes to

make

> sure she didn't have any reflux - sometimes they can have reflux and not

even

> know it because it may not come all the way up and out. A swallow study is

> pretty simple, they make her swallow liquid, then do some sort of an x-ray

> and make sure it's all going where it should be. -Not fun for the kids

> though, cuz they have to be restrained. All I can say is, if you decide to

do

> it - start her feedings SLOW, especially if you are doing them at night.

Jes

> has a hard time with her night feeds, she was vomitting almost every

morning,

> so we had to turn them down. It seems like common sense to me - at night,

> your body can't possibly digest much since you're so inactive. Her Dr's

are

> pushing us way too much to get her feeds up higher, I think. So, also if

and

> when you do it, go with you're best judgement too, I think our problem is

> that we don't have any diagnoses on her yet, so they are treating her like

a

> normal 2 yr old - I seriously think they want to see her weighing 20 lbs

> right now! Sorry for rambling - I think I've had all this bottled up for

a

> while, but hope I've helped anyway!

> , Mom to (22 mos RSS?) , (4 1/2)

>

> ---------------------------

[Guest guest]

Hi & Steve,

My son, , has had a g-tube since 17 months. He's now 2. No fundo was

done, nor any testing for reflux. We use his tube mainly for overnight feeds.

He can eat orally and drinks out of a bottle and sippi cup during the day. He's

still on formula, Similac with 24 calories. He doesn't like Pediasure, so we've

kept him on formula. I don't use it at all during the day, unless he's not

feeling well, then I sneak some food into him cause otherwise he won't eat

hardly

anything at all. I use it for meds. once in a while - It's nice to know he got

it all and it won't come back up (i.e., vomiting). It definately was not an

easy decision to have it placed, but using it now is no big deal. In fact I had

to change his peg today because the balloon burst in the tube. When there's

leakage, the tube won't stay properly in place. So, I pulled out his back-up

peg, pulled the old peg out and put the new one in and blew up the little

balloon

to keep it in place. If I can do this, anybody can. I'm no nurse that's for

sure. The tube has helped significantly with his weight/height gain and helps

to

relieve some of the stresses in making sure he's getting all the right nutrients

during the day. Hope all this helps. If you have any other questions, please

ask and I can share more.

Cheryl

Mom to , , and - all TWO

Lequiz@... wrote:

> From: Lequiz@...

>

> Hi,

> My question is for any parent that has a RSS child that was, or is

> currently, Gtube fed.

>

> Did your child also get a Nissan Fundoplication? What type of testing

> was done to see if reflux would be a problem? Did they get the Nissan at the

> same time as the Gtube? Would you do it all again?

>

> Our daughter is healthy, active, social, talkative and medicine free!

> She has been tested to be cognitively ahead by as much as a year, with gross

> motor skill delays of about 6 months. She is very much the typical toddler;

> she eats a small variety of foods (all fattening ones thank goodness) but in

> pretty small portions. We did try Periactin, but it did not work positively

> for her. We still bottle feed her formula in the middle of the night

> proactively in case of hypoglycemia.

>

> It has been recommended to do the Gtube and nighttime feedings to

> increase her weight and height. For growth and in preparation for GH. Any

> information and experience you could share on this subject would be so

> greatly appreciated by this confused and afraid-to-make-the-wrong-decision

> couple.

>

> and Steve

> (Parents to - RSS, 23 months, 15 1/2 lbs, 29 inches)

>

> ---------------------------

[Guest guest]

& Steve,

Me again. is right about starting the feeds slow if you're only going

to

use a tube overnight. I totally went against what the doctors recommend and did

what I felt comfortable with. I started very, very slow with the feeds and

gradually worked my way up at my own pace. Afterall, if you give your kid too

much and he/she decides to vomit, you've totally defeated the purpose of using

the tube. Also, unless your child's doctor sleeps in your house and is willing

to clean up the mess, you do what you feel is necessary. Our GI continually

wants me to bump up his feeds, and I do, but at my own pace. Thanks for

reminding me of all that.

Cheryl

Jenwali848@... wrote:

> From: Jenwali848@...

>

> Hi,

> My just got her G-tube in November - Her pediatricians were pushing

> us for almost a year to do it and we resisted - only because she had had a

> NG-tube (same thing but thru her nose) at one point and we just started

> bollus feeds (alot all at once) and all she did was stop eating and start

> vomitting. We resisted the G-tube because of our NG tube experience and was

> very frustrated that we weren't told more about it and how it works until we

> finally decided to try it! - all I can say now, in hindsight is I WISH WE

> WOULD HAVE DONE IT SOONER!! We began to see improvements in her strength

> immediately and also started to look almost chubby (comparitively speaking)!

> As for the fundoplication, if your doesn't vomit, she probably

> doesn't need that part of it. To put it simply, the fundo is a " stomach wrap "

> which helps keep everything down. They did a " swallow study " on Jes to make

> sure she didn't have any reflux - sometimes they can have reflux and not even

> know it because it may not come all the way up and out. A swallow study is

> pretty simple, they make her swallow liquid, then do some sort of an x-ray

> and make sure it's all going where it should be. -Not fun for the kids

> though, cuz they have to be restrained. All I can say is, if you decide to do

> it - start her feedings SLOW, especially if you are doing them at night. Jes

> has a hard time with her night feeds, she was vomitting almost every morning,

> so we had to turn them down. It seems like common sense to me - at night,

> your body can't possibly digest much since you're so inactive. Her Dr's are

> pushing us way too much to get her feeds up higher, I think. So, also if and

> when you do it, go with you're best judgement too, I think our problem is

> that we don't have any diagnoses on her yet, so they are treating her like a

> normal 2 yr old - I seriously think they want to see her weighing 20 lbs

> right now! Sorry for rambling - I think I've had all this bottled up for a

> while, but hope I've helped anyway!

> , Mom to (22 mos RSS?) , (4 1/2)

>

> ---------------------------

[Guest guest]

and Steve,

Our daughter has a G tube but no fundiplication(sp?). She has

responded well with tube.It was a God send for our and us.Sorry this

is so short but I'm behind with about 80 more e mails to read.

Peace and Prayers

Mark dad to 4 ( 5 in April), G-tube