G-tube question

January 17, 2005

Hi! I have a 26 mo old son who has had a g tube for 14 mos now. He

had it placed for a variety of reasons....surgery, gastroparesis,

severe reflux, DGE, oral aversion (possible SID), you name it! FTT

actually was not the reason until immediately befoe his surgery. He

was emergently ill and they did the surgery days after we were

admitted to the hospital. Since then, he has had blood sugar issues

which make it necessary for him to have pump formula feeds and we are

in the process of weaning to table food right now. He is

supplemented by night feeds as he is unable to maintain weight with

oral intake alone.

The tube, actually a button, has been a godsend. It is an easy

procedure to place and heals relatively quickly. As always, there is

the risk of infection, but we have never had one in the 14 mos we

have used his. We have a button and not a tube as those are much

easier to use, leak less, and are much less noticable and have less

chance of pulling out as they are more flush with the skin. There

are many different kinds. We used the BARD at first, hated that one,

had is surgically replaced out to a MicKey, and now have switched to

a Corflo Cubby, which by far is our favorite. Sorgerons differ as to

whether they will place a PEG tube first and change it out to a

button later, or if they will start out right away with a button. I

personally would recommend a button as it is easy to use and not

nearly as much of a problem as a tube can be. The buttons have

tubing extensions that connect to them and make it weasier to feed.

Please feel free to ask any questions you may have.

Also, if you are looking into supplemental formulas and/or a pump to

use for feeds, let me know if you need any help as we have been

through a number of formulas and pumps and I have info I can share

about that as well. Hope this helps!

Melody, mom to 2 yr old , THI, GERD, DGE, RAD, Gastroparesis,

Dumping Syndrome, G Tube supplemented.

>

> I was wondering if any of the PID children have a g-tube due to

> FTT?? We went into to see Zachary's GI this past week and have been

> told that we may not have any other options but to place one. He

has

> no reserve left when it comes to body weight, and hasn't gained or

> grown in quite a while. He will be 6 in May and weighs 35 pounds. I

> am wondering what the risks are as far as infection or any other

> problems that may arise. I was able to get her to place him back on

> enzymes and give us another 2 months before she will proceed-as

long

> as he doesn't continue to lose. Zachary was on enzymes before and

he

> actually gained and grew, and it made a difference in his chronic

> diarrhea. The GI removed him from them because she could not find

> a " clinical " reason for him to be on it.

> We also have another mystery on our hands when it comes to Zach's

> gut. His diarrhea, and his skin rashes clear up ON antibiotics. The

> GI says that it points to a bacterial overgrowth. Zachary is

already

> on probiotics, and has had to be on antibiotics so much lately that

> we have not gotten a chance to do any testing off of them. We are

> also waiting for the genetic testing for CF to come back, since

that

> discussion has come up a few times between Zachary's specialists.

We

> have had sweat tests done, and they have been negative, but his

> specialists have explained to me that we needed to do the genetic

> testing is important to rule it out completely. Hopefully we will

> have those results in the next few weeks also.

> As far as the g-tube, I know that it may be the best option at this

> point for Zachary,but I am afraid to take that step. It's been a

> long hard road to watch him go from a 9p 13 ounce newborn, to a

> toddler that was full of rolls, to such a small skinny child. We

> have gone the route of formulas,pediatric drinks,added extra

> calories, used meds and there just doesn't seem to be any other

> options left at this point. ANY IDEAS???? From yet another

desparate

> mom who just wants her child to be as " healthy " as they can be and

> to live a as " normal " life as a child with chronic health concerns

> can!!.~MG & Zach (5-7-99)monthly IVIG,IgG total deficiency,

> IgG1 & 4deficiency, IgA deficiency,Antibiody Dysfunction, Asthma,

> GERD,Chronic Sinus, Diarrhea and skin infections,FTT and too much

> more.....

January 17, 2005

" His diarrhea, and his skin rashes clear up ON antibiotics. "

My daughter was the same way! She started with difficulty stooling, then blood

mucus, and then diarrhea for an extended period. Now we are back to trouble

stooling...but at least she is managing on IVIG/probiotics and no antibiotics.

It took about 6 months before her body could get over the initial insult from

immune problems--coupled with dependence on antibiotics. She was on vancomycin

for months (can't remember exactly how long) and would have been destroyed

without it. The IVIG was lifesaving and got her off all the meds. BUT, it was

almost one year before she seemed " almost healed " and we are still dealing with

troublesome but not life threatening stuff.

She also has IgG Subclass 1 and 4 deficiency!!! There must be something to

this. I am noticing that the pumpkins here with gut problems have the IgG4

deficiency...and little research has been done on this.

As you know, the role of nutrition is so critically important for our

children...more than for others. If infection is not an issue, nutrition support

can be so helpful. I was asked to talk about the role of nutrition with the

SCIDS group and thought you might be interested in a note that I wrote to one of

the parents months ago...

" Malnutrition, independent of an infection, can lead to immune function decline

predisposing the body to infections and other conditions associated with loss of

immune function. There are studies that show how skin tests (e.g., tetanus,

candida, trychophytin, etc.) will NOT produce accurate results if a child is not

well

nourished. Anergy (no reaction) has been found in children that are

malnourished and this is a sign of SCIDS! To think that a SCIDS like reactions

may be

produced in a " healthy " child who has a poor diet is amazing and points out the

importance of good nutrition for our children, in particular. "

So, if you end up having to do enteral nutrition for Zach...it might just be a

blessing. He might improve a bit with good nutrition--in addition to what you

are already doing.

(mom to la, low everything--including IgG1 and 4, and gut issues

too!).

January 19, 2005

Hi,

I just thought I would let you know that andra had a G-tube for 6 years

and we never had problems with infections at the site. Sometimes the site

was prone to leakage and irritation but over time that eventually stopped.

The G-tube was literally a life-saver for us and kept out of the

hospital many times because we could keep her hydrated when she was sick and

refusing to eat. My thirteen year old son has Crohn's Disease and we talked

quite often with his GI doc about a G-tube for him due to FTT, when he was

younger. They have found that some pediatric CD patients have had much

success gaining weight and becoming significantly healthier because of

supplemental G-tube feeds at night. He ended up not needing one but I would

have done it in a second if it had truly been a need for him.

Hope this info helps a little

Jeane

_____

From: mgt66 [mailto:mgt66@...]

Sent: Monday, January 17, 2005 9:11 AM

Subject: G-tube question

I was wondering if any of the PID children have a g-tube due to

FTT?? We went into to see Zachary's GI this past week and have been

told that we may not have any other options but to place one. He has

no reserve left when it comes to body weight, and hasn't gained or

grown in quite a while. He will be 6 in May and weighs 35 pounds. I

am wondering what the risks are as far as infection or any other

problems that may arise. I was able to get her to place him back on

enzymes and give us another 2 months before she will proceed-as long

as he doesn't continue to lose. Zachary was on enzymes before and he

actually gained and grew, and it made a difference in his chronic

diarrhea. The GI removed him from them because she could not find

a " clinical " reason for him to be on it.

We also have another mystery on our hands when it comes to Zach's

gut. His diarrhea, and his skin rashes clear up ON antibiotics. The

GI says that it points to a bacterial overgrowth. Zachary is already

on probiotics, and has had to be on antibiotics so much lately that

we have not gotten a chance to do any testing off of them. We are

also waiting for the genetic testing for CF to come back, since that

discussion has come up a few times between Zachary's specialists. We

have had sweat tests done, and they have been negative, but his

specialists have explained to me that we needed to do the genetic

testing is important to rule it out completely. Hopefully we will

have those results in the next few weeks also.

As far as the g-tube, I know that it may be the best option at this

point for Zachary,but I am afraid to take that step. It's been a

long hard road to watch him go from a 9p 13 ounce newborn, to a

toddler that was full of rolls, to such a small skinny child. We

have gone the route of formulas,pediatric drinks,added extra

calories, used meds and there just doesn't seem to be any other

options left at this point. ANY IDEAS???? From yet another desparate

mom who just wants her child to be as " healthy " as they can be and

to live a as " normal " life as a child with chronic health concerns

can!!.~MG & Zach (5-7-99)monthly IVIG,IgG total deficiency,

IgG1 & 4deficiency, IgA deficiency,Antibiody Dysfunction, Asthma,

GERD,Chronic Sinus, Diarrhea and skin infections,FTT and too much

more.....

This forum is open to parents and caregivers of children diagnosed with a

Primary Immune Deficiency. Opinions or medical advice stated here are the

sole responsibility of the poster and should not be taken as professional

advice.

To unsubscribe -unsubscribegroups (DOT)

To search group archives go to:

/messages

_____

January 19, 2005

>

> I was wondering if any of the PID children have a g-tube due to

> FTT?? We went into to see Zachary's GI this past week and have been

> told that we may not have any other options but to place one. He

has

> no reserve left when it comes to body weight, and hasn't gained or

> grown in quite a while. He will be 6 in May and weighs 35 pounds. I

> am wondering what the risks are as far as infection or any other

> problems......

> As far as the g-tube, I know that it may be the best option at this

> point for Zachary,but I am afraid to take that step. It's been a

> long hard road to watch him go from a 9p 13 ounce newborn, to a

> toddler that was full of rolls, to such a small skinny child.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Hi Grace!!!

My son Blake is sonn to be 13(2 weeks), He does have a G-Tube

(actually it is a Mic-Key Button). We have not had a problem with it

getting infected. The only time it was a problem is when Blake

actually grew & they had to " size it up " .

Blake ha one places when he was 3 yrs. of age. He only weighed 18

lbs. We just thought he was small because of being a preemie(weighed

1lb. 6oz.) He had to undergo a Nissen Fundoplication for severe

reflux. At terh time he was constantly throwing up & sick with

pneumonia at least 10 times since coming home at 6mos of age.

When he was 4 the " button " fell out during rough housing with dad.

We left it out. Then Blake still had problems gainging weight. At

6yrs. of age he weighed 26lbs. He was placed on the Creon and had a

NG Tube for feeds over nite & gained to 32 lbs.. He evidently hit a

plateau. We went to DUKE for a complete work up. The GI there told

us that Blake needed tth " button " placed & would probably need it for

a while(years).

Well, Blake is finally over the 70 lb. mark but still small for a 13

yr. old. He does not have a problem with the button. When we talk

about having it removed he gets worried about not gaining weight, so,

we don't bother him. His Pulmo. tells us that he really does need it

because he still has problems with the digestion of Protiens(does not

make Trypsinogen...pancreas.......or trypsin......found in the poop).

As well as he still has aspiration pneumonia about 2'xs a yr. He has

undergone a revision for the Nissen because it came undone & had to

be repaired last year.

It is scarry to think about having the button placed. But we weighed

the pros & cons concerning Blake. One was everytime he does get

sick, we can keep him hydrated. He does tend to lose any where from 5-

10lbs. when he gets sick(doesn't like to eat). Blakw at teh time only

weighed as much as a 3 yr. old. We also put into play what Blake was

feeling at the time. He knew he was small for his age & this would

help him to " fit in " when it comes to playmates. So, it does take a

lot of thinking & sorting out, but in the end you find the benefits

as to what you think is best for Zachary.

Good luck!!!

(mom to Blake....CVID with Complete T-Cell Dysfunction(IVIG

every 2 weeks), Asthma, GERD, Asperger's Syndrome with ADHD,

Intergrated Sensory Motor Skills Delays, A Rare Blood Clotting

Disorder, LOVES to read & thinks he is indestrutable!!!!)

http://www;caringbridge.com/ca/blake

Come on in, sit down, kick off you shoes & set a spell & see the

MIRACLES we have in Blake!!!!!!

October 2, 2009

Hi all,

I'm considering getting a g-tube and had some questions the doctor couldn't

answer (big surprise!)... I am thinking of having it placed by the less

invasive peg procedure (forget the terms) meaning where it is placed without

laparoscopic surgery. They would put me under a twilight sleep, have any of

you had the twilight sleep? What is it like? Can you think straight at

all? Can you move? Can you use bi-pap during the procedure or did you need

to be vented?

I guess my biggest question is that I do breathing treatments everyday and

rely heavily on assisted cough by abdominal thrusting. Can you still do

this with the g-tube placed? How long of a recovery period is there before

I may be able to tolerate the assisted coughing?

If anyone has any thoughts I'd appreciate!

Thanks.

October 2, 2009

Hi Nic-

I got my g-tube a few years ago, and its 50/50 my likes vs dislikes...I'm gonna

try to give u my answers to your questions...

They would put me under a twilight sleep, have any of

you had the twilight sleep? What is it like? Can you think straight at

all? Can you move? Can you use bi-pap during the procedure or did you need

to be vented?

The Twiligt sleep was ok for me. Your not completely asleep, but I had severe

anxiety attack during the begining of the procedure so they *REALLY* drugged me.

At first I hadda have a tube put into my nose and I hated it, they blow air up

your stomach to make it easier for tube placement. They gave me a local

antistetic and all I felt really was ALOT of pressure. I brought my vent into

the O.R. but didnt need to use it becz I didnt need. I suggest you bring your

bipap in just in case you start to need it.

When it was being done the actual procedure was very quick, but like i said they

had problems gettin that tube in my nose cuz my nasal passage were small. The

procedure wasnt a big deal, they did injure my knee when they were transfering

me, but that wasnt the g-tube. When I woke up I lookd at my belly and was pissed

after I saw a big old tube hangin outta me when they told me it'd be a lil

" button " and no big tubes...they didnt tell me I'd need a big yucky tube for 2

weeks before I got my Mic*Key button. If I could give you any advice that I wish

I had was make sure you get a standard size button vs a customizd size. I have a

customizd one and my DME has a hell of a time trying to find the right size becz

the manufacturer dont make customized tubes anymore...

My tube gives me freedom from not making myself eat the whole meal since its

gotten to be so much work for me to eat, breathe, and digest. I eat for

pleasure and tube for nutrition. Hope this helpped a little bit.

Jodi & Juni

Digital Scrapbook Artist & Service Dog

All Scraps 4 You

www.freewebs.com/allscraps4you

________________________________

From: <nicoleroberts@...>

" " < >

Sent: Fri, October 2, 2009 1:23:42 AM

Subject: G-tube question

Hi all,

I'm considering getting a g-tube and had some questions the doctor couldn't

answer (big surprise!).. . I am thinking of having it placed by the less

invasive peg procedure (forget the terms) meaning where it is placed without

laparoscopic surgery. They would put me under a twilight sleep, have any of

you had the twilight sleep? What is it like? Can you think straight at

all? Can you move? Can you use bi-pap during the procedure or did you need

to be vented?

I guess my biggest question is that I do breathing treatments everyday and

rely heavily on assisted cough by abdominal thrusting. Can you still do

this with the g-tube placed? How long of a recovery period is there before

I may be able to tolerate the assisted coughing?

If anyone has any thoughts I'd appreciate!

Thanks.

October 3, 2009

Thank you jodi, that does help. Do they have that tube in your nose the

whole time? I'm not sure how I would use my bi-pap with the tube in my

nose!! When they put the air in your stomach - do they put a lot?

Sometimes the bi-pap blows my stomach up with air and I have trouble

breathing when it is full like that. did it hurt for a long time or how

much did it hurt after?

On 10/3/09 12:41 AM, " Jodi & Juni " <junikins4me@...> wrote:

> Hi Nic-

> I got my g-tube a few years ago, and its 50/50 my likes vs dislikes...I'm

> gonna try to give u my answers to your questions...

>

> They would put me under a twilight sleep, have any of

> you had the twilight sleep? What is it like? Can you think straight at

> all? Can you move? Can you use bi-pap during the procedure or did you need

> to be vented?

>

> The Twiligt sleep was ok for me. Your not completely asleep, but I had severe

> anxiety attack during the begining of the procedure so they *REALLY* drugged

> me. At first I hadda have a tube put into my nose and I hated it, they blow

> air up your stomach to make it easier for tube placement. They gave me a local

> antistetic and all I felt really was ALOT of pressure. I brought my vent into

> the O.R. but didnt need to use it becz I didnt need. I suggest you bring your

> bipap in just in case you start to need it.

>

> When it was being done the actual procedure was very quick, but like i said

> they had problems gettin that tube in my nose cuz my nasal passage were small.

> The procedure wasnt a big deal, they did injure my knee when they were

> transfering me, but that wasnt the g-tube. When I woke up I lookd at my belly

> and was pissed after I saw a big old tube hangin outta me when they told me

> it'd be a lil " button " and no big tubes...they didnt tell me I'd need a big

> yucky tube for 2 weeks before I got my Mic*Key button. If I could give you any

> advice that I wish I had was make sure you get a standard size button vs a

> customizd size. I have a customizd one and my DME has a hell of a time trying

> to find the right size becz the manufacturer dont make customized tubes

> anymore...

> My tube gives me freedom from not making myself eat the whole meal since its

> gotten to be so much work for me to eat, breathe, and digest. I eat for

> pleasure and tube for nutrition. Hope this helpped a little bit.

>

> Jodi & Juni

> Digital Scrapbook Artist & Service Dog

> All Scraps 4 You

> www.freewebs.com/allscraps4you

>

> ________________________________

> From: <nicoleroberts@...>

> " " < >

> Sent: Fri, October 2, 2009 1:23:42 AM

> Subject: G-tube question

>

> Hi all,

>

> I'm considering getting a g-tube and had some questions the doctor couldn't

> answer (big surprise!).. . I am thinking of having it placed by the less

> invasive peg procedure (forget the terms) meaning where it is placed without

> laparoscopic surgery. They would put me under a twilight sleep, have any of

> you had the twilight sleep? What is it like? Can you think straight at

> all? Can you move? Can you use bi-pap during the procedure or did you need

> to be vented?

>

> I guess my biggest question is that I do breathing treatments everyday and

> rely heavily on assisted cough by abdominal thrusting. Can you still do

> this with the g-tube placed? How long of a recovery period is there before

> I may be able to tolerate the assisted coughing?

>

> If anyone has any thoughts I'd appreciate!

>

> Thanks.

>

October 3, 2009

Hi ,

I do not have a G-Tube, but did have twilight sleep once. I just remember them

saying they were giving me the medication, then saying " OK, you're done! " I

thought I was still waiting for them to get started, and they were finished! You

don't remember anything, but they say you are able to answer questions, etc. I

didn't need my Bi-PAP, but it wouldn't hurt to bring it along.

________________________________

From: <nicoleroberts@...>

" " < >

Sent: Sat, October 3, 2009 3:18:12 AM

Subject: Re: G-tube question

Thank you jodi, that does help. Do they have that tube in your nose the

whole time? I'm not sure how I would use my bi-pap with the tube in my

nose!! When they put the air in your stomach - do they put a lot?

Sometimes the bi-pap blows my stomach up with air and I have trouble

breathing when it is full like that. did it hurt for a long time or how

much did it hurt after?

On 10/3/09 12:41 AM, " Jodi & Juni " <junikins4me> wrote:

> Hi Nic-

> I got my g-tube a few years ago, and its 50/50 my likes vs dislikes...I' m