Re: Fundoplication - Eileen

[Guest guest]

Hi Pat, Yes...the Nissan thing rings a bell now you mention it. Gosh...what a

lot of things has had done! Thankfully we didn't have to do any of that

with Imogen because the reflux stopped once she got rid of the gastrostomy

tube.She never brings anything back up now ....quite amazing when I think back

to how bad her after feed vomiting was in her first 3 years of life. We had to

replace our living room carpet she had sicked on it so much!

regards

Eileen

pcpets pcpets@...> wrote:

Hi Eileen,

A fundoplication is a surgical procedure done to tighten the top of the

stomach to help control reflux. A nissan fundo, is the one I've heard most

commonly. I believe this refers to the way the surgery is done.

had a fundoplication, and a pyloroplasty, (a surgical procedure done

to loosen the pylorus sphincter and aid the emptying of the stomach) when he

got his g-tube at 8.5 months.

Hope this helps

Pat (g-ma to , RSS, 2 years old!!, 20# 5.2oz, 29 " , Prevacid, Zantac,

Singulair, GT)

[Guest guest]

Eileen,

It sounds like they didn't do a fundo when Imogen got her tube, and that she

might have been suffering from delayed gastric emptying besides. did

have periods of gagging/retching after his surgery, but we worked with

adjusting his feeds schedule, and those slowly went away.

was very malnourished, and catabolic, at the time he got his tube,

and had developed a severe oral aversion. Bottle feeding was almost

impossible, and we were only able to get between 8-10 ounces of formula down

him per day. Dr H believes that he blew his fundo shortly after his surgery,

because of a poor ability to heal in his weakened condition. His reflux is

controlled with meds right now, but Dr H would like to see his fundo redone

soon. All three prodedures were done at the same time, so he only had to

endure the one surgery.

And by the way, I wanted to let you know that " catch-up " growth is possible

for our kids. should be the poster child for catch-up growth and

beyond! LOL He's done so well on Dr H's regimin, that no one at the

convention thought he had RSS. (His pics are under Lee in the Photo

Section, although I need to update them again)

Pat (g-ma to , RSS, 2 years old!!, 20# 5.2oz, 29 " , Prevacid, Zantac,

Singulair, GT)

[Guest guest]

Hi Pat, no....a nissan thing was mentioned but we didn't want them to do that so

she didn't have it. Without any medical intervention her reflux went away

naturally at about 3 when she started eating and we stopped the liquid food.We

did have her on cisapride for a little while but it didn't do much good and

there are health implications with that stuff anyway.

Imogen had her tube put in at 16 months and she absolutley needed it then

because she had an oral aversion too. But it wwent away virtually overnight when

she was 3....hope the same happens for . I personally don't believe that

RSS kids can catch up to be normal average heights tho I know some mildly

affected RSS kids can do very well....boys getting up to 5 ft 4 or

so.Unfortunately Imogen is severe RSS so she will never catch up no matter what

we do.

I've seen 's pics...he's lovely...he hasn't got the classic RSS look tho

so I would guess he is mild so hopefully should 'catch up' to be over 5 feet.

J Fox is only 5 feet 4...and I used to adore him...!!Still do actually!!

shhhh......

Eileen

pcpets pcpets@...> wrote:

Eileen,

It sounds like they didn't do a fundo when Imogen got her tube, and that she

might have been suffering from delayed gastric emptying besides. did

have periods of gagging/retching after his surgery, but we worked with

adjusting his feeds schedule, and those slowly went away.

was very malnourished, and catabolic, at the time he got his tube,

and had developed a severe oral aversion. Bottle feeding was almost

impossible, and we were only able to get between 8-10 ounces of formula down

him per day. Dr H believes that he blew his fundo shortly after his surgery,

because of a poor ability to heal in his weakened condition. His reflux is

controlled with meds right now, but Dr H would like to see his fundo redone

soon. All three prodedures were done at the same time, so he only had to

endure the one surgery.

And by the way, I wanted to let you know that " catch-up " growth is possible

for our kids. should be the poster child for catch-up growth and

beyond! LOL He's done so well on Dr H's regimin, that no one at the

convention thought he had RSS. (His pics are under Lee in the Photo

Section, although I need to update them again)

Pat (g-ma to , RSS, 2 years old!!, 20# 5.2oz, 29 " , Prevacid, Zantac,

Singulair, GT)

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

[Guest guest]

Hi Eileen,

Actually was very " classic " in his RSS features before his g-tube,

and his caloric catch-up growth. Dr H (Dr Stanhope's American counter-part)

had absolutely no question as to whether was RSS or not. And Dr H

has described him as one of her " most complicated and fragile " RSS cases.

Hard to believe when you see the little bruiser he is now, huh? LOL

And if you mean by " catch-up " that these kids would grow up to be of

" normal " height and weight, then I have to agree with you, that kind of

catch-up will never occur without medical assistance.

is still below the " normal " curves on both the weight, and height

charts, but he has attained the 50% on the weight-for-height chart. This

doesn't mean that he will be over 5' without intervention, and neither his

mom nor dad are tall in the extreme. His mom is 4'11 " , and his dad is 5'8 " .

's projected height without RSS would be approximately 5' 5.5 " . He is

currently tracking below the average line for RSS boys, so I would guess

that he would be small for even an RSS adult male if we don't intervene in

some way.

The lessening of reflux always occurs with the use of more " solid " foods.

Solids weigh more, and stay down easier. Recently has taken an

interest in trying more foods by mouth. He actually ATE some of his cake and

ice cream for his b-day. We're hoping that he keeps this up, but we've been

disappointed before, so we're trying to keep a wait-and-see type attitude.

LOL

By the way, I, too, love J Fox! He's one of my favorite actors of

all time!

pat

[Guest guest]

Wow!! the more you tell me about the more amazed I am at how well he's

doing!! Did you ever tell me what he weighed at birth? Imogen was 2lbs 13oz at

full term. Teeny little scrap she was. 's estimated final height without

growth hormone is very unusual. I would expect him to be a 6 footer with gh

treatment! According to the Child Growth Foundation in the UK which is an

umbrella group for RSS, s,Achondraplasia and SOTO;s the average height for

an RSS girl is 4ft 9 and 5ft 2 for a boy......so looks like is going to

be breaking records....they grow them bigger in the US obviously!

As for the eating....don't despair...it will happen....even our paedo once said

to me he thought Immi would always have the tube! Mind you I think I knew more

about RSS than he did so.....

Yes....what a shame J Fox is ill now.....he still looks gorgeous tho'.

When I was in my 20's I was still living at home and I had an enormous poster of

him on my wall....my mother used to worry about me.....(i was 24...)

Eileen

pcpets pcpets@...> wrote:

Hi Eileen,

Actually was very " classic " in his RSS features before his g-tube,

and his caloric catch-up growth. Dr H (Dr Stanhope's American counter-part)

had absolutely no question as to whether was RSS or not. And Dr H

has described him as one of her " most complicated and fragile " RSS cases.

Hard to believe when you see the little bruiser he is now, huh? LOL

And if you mean by " catch-up " that these kids would grow up to be of

" normal " height and weight, then I have to agree with you, that kind of

catch-up will never occur without medical assistance.

is still below the " normal " curves on both the weight, and height

charts, but he has attained the 50% on the weight-for-height chart. This

doesn't mean that he will be over 5' without intervention, and neither his

mom nor dad are tall in the extreme. His mom is 4'11 " , and his dad is 5'8 " .

's projected height without RSS would be approximately 5' 5.5 " . He is

currently tracking below the average line for RSS boys, so I would guess

that he would be small for even an RSS adult male if we don't intervene in

some way.

The lessening of reflux always occurs with the use of more " solid " foods.

Solids weigh more, and stay down easier. Recently has taken an

interest in trying more foods by mouth. He actually ATE some of his cake and

ice cream for his b-day. We're hoping that he keeps this up, but we've been

disappointed before, so we're trying to keep a wait-and-see type attitude.

LOL

By the way, I, too, love J Fox! He's one of my favorite actors of

all time!

pat

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