Re: gagging and congestion

[Guest guest]

:

Oh great! has horrible motility. I wasn't told that either.

But at the time (10, 11,12 years ago) we were told there were no other

alternatives for us. He wasn't keeping anything down. I don't know what

it's like now. still gaggs if fed too much but I believe that is

from the pyloriplasty which caused the dumping.

Shaunie

Mom to , Brendon, and Caillean

Graeme & Weir wrote:

> Mike, I agree wholeheartedly with the failure rate for fundos. We

> were told 15%, but I guess the hospital now says it is higher than

> that. We went into it knowing that for sure. There have been many

> cases I've heard of on the list that prove that the fundo is not

> always the best answer. Thank goodness it has worked and worked well

> for us. We had about 2 months of post-op gagging (which were horrid),

> but since then she only gags periodically and I think it's more from

> post-nasal drip, and increased " junk " from scar tissue up her

> nose. I think the best thing anyone could do when considering a

> fundo is a lot of pre-operative testing of motility. After Kennedy's

> surgery, I did a lot of reading about them (kinda backwards to do it

> afterwards..but...) and found that the best success in fundos is only

> doing them in people with good motility. It only makes sense that

> constant negative pressure pushing up on the fundo will loosen, or

> undo it altogether. I was actually a little ticked that absolutely NO

> pre-op testing was done on Kennedy. Just another thing to be on top

> of I guess.

> Mom to Kennedy 22 mos old CHARGEr, 10, 8, and wife to Graeme

>

> New Brunswick, Canada

> Visit the " Weir homepage " at:

> http://www.geocities.com/SunsetStrip/Palms/5716

> ICQ #1426476

>

> Re: Re: gagging and congestion

> From: VtaCHARGE@...

>

> wrote that a fundoplication stopped Kennedy's reflux

> and suggested it as

> a possible (but extreme) solution for gagging.

>

> I don't know what your situtation is, but can share our

> experience with you.

> Danny has a g-tube (gastrostomy tube), a fundoplication, and

> a pyloroplasty.

> Our gastroenterologist told us that the g-tube surgery can

> *increase* gagging

> because it changes the angle of the stomach. I don't know

> if the g-tube made

> Danny's gagging worse, but he still gags and vomits every

> day. The

> fundoplication was supposed to stop the vomiting, and it did

> for a few

> months, but then, apparently, it loosened up. The result is

> that he is

> vomiting again. From what I have read, the failure rate for

> fundoplications

> is something like 30%.

>

> What is my conclusion? I don't know. When Danny was 3

> months old, he was

> eating so little and vomiting most of it up so that he was

> actually losing

> weight. Under the circumstances, I think we made the

> right decision to get

> the g-tube and, a couple of weeks later, the

> fundoplication. My point only

> is that there are drawbacks to these procedures. Tough

> decisions...all you

> can do is make your best call and hope for the best! Best

> of luck...

>

> -Mike Schwartz in Ventura, CA, father of 23-month old twins

> (CHaRgE)

> and

>

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

[Guest guest]

Re: gagging and congestion

:

Oh great! has horrible motility. I wasn't told that either. But at

the time (10, 11,12 years ago) we were told there were no other alternatives for

us. He wasn't keeping anything down. I don't know what it's like now.

still gaggs if fed too much but I believe that is from the pyloriplasty which

caused the dumping.

Shaunie

Mom to , Brendon, and Caillean

Shaunie,

We were actually told there was no other alternative but a j tube. But,

since I was here on the list and had heard that quite a few of the kiddos have

fundos, I wanted to exhaust that route before going to the j tube. We were

willing to take the chance, and if it didn't work, we'd have had to have gone

with the j tube. They were really hesitant to do the fundo, just wanted to shut

that CHARGE mom up I guess! maybe that's why they skipped the testing. Who

knows???

Mom to Kennedy 22 mos old CHARGEr, 10, 8, and wife to Graeme

New Brunswick, Canada

Visit the " Weir homepage " at:

http://www.geocities.com/SunsetStrip/Palms/5716

ICQ #1426476

[Guest guest]

Shaunie,

Kennedy's fundo had something new done to it as well, it was a new procedure

which helps stuff heal or grow better around the fundo. I don't remember the

specifics, but maybe that's why hers has worked so well. I hope 's really

stays together this time, gagging and vomiting is awful.

Mom to Kennedy 22 mos old CHARGEr, 10, 8, and wife to Graeme

New Brunswick, Canada

Visit the " Weir homepage " at: http://www.geocities.com/SunsetStrip/Palms/5716

ICQ #1426476

Re: gagging and congestion

Mike:

Is gaining weight now? had 3 fundos with the last one finally

working. Dr. Mackie in Orange,CA performed

the final fundo which worked. He said something about a " new " procedure or

clamp or something that worked better. Of

course, it is no longer new, ( was 3 and he is now almost 12) but it

has seemed to stay.

Shaunie

Mom to , Brendon and Caillean

VtaCHARGE@... wrote:

> From: VtaCHARGE@...

>

> wrote that a fundoplication stopped Kennedy's reflux and suggested it

as

> a possible (but extreme) solution for gagging.

>

> I don't know what your situtation is, but can share our experience with

you.

> Danny has a g-tube (gastrostomy tube), a fundoplication, and a

pyloroplasty.

> Our gastroenterologist told us that the g-tube surgery can *increase*

gagging

> because it changes the angle of the stomach. I don't know if the g-tube

made

> Danny's gagging worse, but he still gags and vomits every day. The

> fundoplication was supposed to stop the vomiting, and it did for a few

> months, but then, apparently, it loosened up. The result is that he is

> vomiting again. From what I have read, the failure rate for

fundoplications

> is something like 30%.

>

> What is my conclusion? I don't know. When Danny was 3 months old, he was

> eating so little and vomiting most of it up so that he was actually losing

> weight. Under the circumstances, I think we made the right decision to

get

> the g-tube and, a couple of weeks later, the fundoplication. My point

only

> is that there are drawbacks to these procedures. Tough decisions...all

you

> can do is make your best call and hope for the best! Best of luck...

>

> -Mike Schwartz in Ventura, CA, father of 23-month old twins

(CHaRgE)

> and

>

> > For information about the CHARGE Syndrome Foundation or to become a

member please contact marion@....

---------------------------

[Guest guest]

Shaunie,

I just use a 4 oz second foods (Gerber or Heinz) and 8 to 10 oz of whole

milk. For additional calories you can add polycose to it and it doesn't

change the consistency. We used to add it but we don't anymore. I also used

to use Rice Cereal in the milk, about a 1/2 cup to the milk for her morning

feeds. Now I just use the baby food.

When you add up the number of feeds that Jess takes in a day, she is taking

in 1800+ in the milk alone. Then with the baby food, you can tack on an

additional 600+ cals and that is only if she eats 10 times a day. She didn't

tolerate anymore volume when she had the reflux. Now she eats out of habit

so if I increase the volume she still eats all of the time and I think she

goes on fluid overload so I just keep her at the 8 to 10 oz each feeding.

She is only 46 inches tall and 49 lbs but she has continued to grow on this

diet. The nutritionist can't believe that she doesn't grow more due to the

number of calories that she takes in but she is very active and burns a lot

of calories too.

All of the nutritionists that have reviewed her diet says that with the baby

food variety she is getting everything she needs. They said I could

supplement with a multivitamin just to make sure but she gets diarrhea when I

add that so we loose more than gain.

If you need more info, let me know and I can see what I can get from the

nutritionist.

Sheryl, Mom to Mitch 14 and 13 CHARGE

[Guest guest]

,

I do have food in 's bag. But I always make them supply it. I just

have mine as reserve just in case she is really hungry and they don't have

some with me just in case. I do supply her diapers. They don't stock

x-large and even if they did, they use Pampers and she rashes with those.

The small adults are just way to big for her. So I just bring my own.

Sheryl, Mom to Mitch 14 and 13 CHARGE

[Guest guest]

Sheryl,

I would bring my own food to hospital (in fact, I do even though Kennedy is on

formula), I tire of them screwing up her food order, and yes, it can be done

even with formula. I just save the hassle and do it all myself. I'd like to

see the day some one tells me THEY are switching MY daughter's formula in

hospital.

Mom to Kennedy 22 mos old CHARGEr, 10, 8, and wife to Graeme

New Brunswick, Canada

Visit the " Weir homepage " at: http://www.geocities.com/SunsetStrip/Palms/5716

ICQ #1426476

Fwd: gagging and congestion

Shaunie and ,

13 years ago when Jess got her g-tube, they did the fundo at the same time.

I remember the surgeon saying that he always does the fundo if there is any

possibility of the tube being in place for any length of time. He said that

being fed by the tube, the way the food runs in and hits the stomach it

causes them to reflux. Maybe thoughts have changed over the years but I am

glad Jess had the fundo done. She started to have severe reflux with the

fundo several years later and the fundo was still functioning and intact. I

would hate to think how bad it would have been if she had not had it done.

also has virtually no esophageal motility.

As for the pyloroplasty and dumping. When Jess had hers done, she had

dumping syndrome for about a month and it cleared up. One thing that I did

find is that if I kept her on one type of formula for over 4 or 5 months,

she

would start dumping again. I changed her formulas every few months until we

switched to baby food milkshakes. She has been on that for several years

now

without any trouble. When she is in the hospital, they don't like feeding

her the baby food shakes and always try to switch Jess to formula. She

always gets diarrhea. Then they agree to switch to my mixture and it goes

away. This last hospital stay, when it came time to get her on food, they

wrote orders to let me work on her feedings as tolerated because they never

know how to write orders for my feedings. The formula thing was just a

thought (and sorry it was a long one at that).

Sheryl, Mom to Mitch 14 and 13 CHARGE

[Guest guest]

Sheryl:

Any suggestions for substituting the milk. has a milk allergy as well.

Also, how do you get that thick food

through the g-tube?

Shaunie

Mom tp , Brendon and Caillean

SDoolit272@... wrote:

> From: SDoolit272@...

>

> Shaunie,

>

> I just use a 4 oz second foods (Gerber or Heinz) and 8 to 10 oz of whole

> milk. For additional calories you can add polycose to it and it doesn't

> change the consistency. We used to add it but we don't anymore. I also used

> to use Rice Cereal in the milk, about a 1/2 cup to the milk for her morning

> feeds. Now I just use the baby food.

>

> When you add up the number of feeds that Jess takes in a day, she is taking

> in 1800+ in the milk alone. Then with the baby food, you can tack on an

> additional 600+ cals and that is only if she eats 10 times a day. She didn't

> tolerate anymore volume when she had the reflux. Now she eats out of habit

> so if I increase the volume she still eats all of the time and I think she

> goes on fluid overload so I just keep her at the 8 to 10 oz each feeding.

> She is only 46 inches tall and 49 lbs but she has continued to grow on this

> diet. The nutritionist can't believe that she doesn't grow more due to the

> number of calories that she takes in but she is very active and burns a lot

> of calories too.

>

> All of the nutritionists that have reviewed her diet says that with the baby

> food variety she is getting everything she needs. They said I could

> supplement with a multivitamin just to make sure but she gets diarrhea when I

> add that so we loose more than gain.

>

> If you need more info, let me know and I can see what I can get from the

> nutritionist.

>

> Sheryl, Mom to Mitch 14 and 13 CHARGE

>

> > For information about the CHARGE Syndrome Foundation or to become a member

please contact marion@....

[Guest guest]

Michele,

In my home hospital once (not a children's hospital) they just said " oh, we

don't have her formula, we'll just give her similac " ... GET REAL I said, they

just have no clue that it could/would affect a child greatly by their nonchalant

attitude about switching something that seems so minor to them. Needless to

say, my husband drove 2 hours down and back to our home to bring some of her

formula up to the hospital. Pathetic, eh? Once bitten, twice shy, now I know

to bring all my OWN stuff with me. That way they can't screw it up.

I hope.

Mom to Kennedy 22 mos old CHARGEr, 10, 8, and wife to Graeme

New Brunswick, Canada

Visit the " Weir homepage " at: http://www.geocities.com/SunsetStrip/Palms/5716

ICQ #1426476

Re: gagging and congestion

From: SDoolit272@...

,

I do have food in 's bag. But I always make them supply it. I

just

have mine as reserve just in case she is really hungry and they don't

have

some with me just in case. I do supply her diapers. They don't stock

x-large and even if they did, they use Pampers and she rashes with

those.

The small adults are just way to big for her. So I just bring my own.

Sheryl, Mom to Mitch 14 and 13 CHARGE

---------------------------