Procedure for son

[Guest guest]

Hi all-

It's been a while since I've posted on here! Last time I think I mentioned my

sons appointment with his gi doc in October. His surgical scheduler called me in

December to let me know that she was working on setting a date for Devyn's upper

GI/ dilation ( we are up to dilation number 7 in 2 years) and I never heard

back! So I stalked her and she finally called me back. He is scheduled to go in

On the 17th. His surgeon will also be there to take a look and see if anything

needs to be revised ( he had a heller myotomy as well).

I an curious if anyone knows if 7 dilations in 2 years seems excessive? I've

read plenty of your posts talking about the esophagus getting stretched too far

from too many dilations. I want him to have as much of a normal life as possible

for as long as he can! I don't want to do too much damage at such a young age,

but I also don't want to see him panicking and rushing for water every time he

eats and the food gets stuck! Any advice/opinions are welcome!

Thanks,

Sent from my iPhone

[Guest guest]

>

> Hi all-

>

> It's been a while since I've posted on here! Last time I think I mentioned my

sons appointment with his gi doc in October. His surgical scheduler called me in

December to let me know that she was working on setting a date for Devyn's upper

GI/ dilation ( we are up to dilation number 7 in 2 years) and I never heard

back! So I stalked her and she finally called me back. He is scheduled to go in

On the 17th. His surgeon will also be there to take a look and see if anything

needs to be revised ( he had a heller myotomy as well).

> I an curious if anyone knows if 7 dilations in 2 years seems excessive? I've

read plenty of your posts talking about the esophagus getting stretched too far

from too many dilations. I want him to have as much of a normal life as possible

for as long as he can! I don't want to do too much da

mage at such a young age, but I also don't want to see him panicking and rushing

for water every time he eats and the food gets stuck! Any advice/opinions are

welcome!

>

> Thanks,

>

>

> Sent from my iPhone

Hi , I haven't been on here, in quite some time. How old is your son?

My

son had a Heller myotomy when he was 6yrs old. He is 17 now. And he has

only

Had one dilation a few yrs after his operation.....what do they say the

reason is for

doing so many dilations?....My son says food always gets stuck, every time

he eats.

That's all he has ever known He drinks a ton of liquid every time he

eats.....soda

Pop seems to help food go down better, he says....His G I doc said it will

always be

hard for him to swallow. The heller myotomy and dilations don't really do

any-

thing for the muscles and nerves that push the food down. They just help

to open

up the sphincter muscle......Does your son take any medications? Mine

doesn't but

the doc wants to put him on a previcid type med. (Son doesn't want to) Doc

says

that Achalasia patients could get Cancer of the lining of the

esophagus....Doc seems to think the NCCP 's that my son Has been getting

for

years is acid reflux....was wondering what others out there thought.??? My

son

describes the pains as sharp, stabbing pains......Doc wants to scope him

and do a

biopsy of the lining of they E.S.......My heart goes out to you,.

As moms

it's so hard to watch our kids go thru this rare condition. My son doesn't

eat much

at school and it's got to be so hard for him to see other boys wulfing down

their

food ......he's very active in sports and I worry about his weight,

especially football!

If it was me, and the doc wanted to do so many dilations on my son, I

think I

would want to get a second opinion....wish you well,

>

[Guest guest]

I had 4 last year...and like you post HM. I know...its frustrating but it seems

like our young ones must have a very tight valve...sigh.Maureen Young

From: troy_kittykat <troy_kittykat@...>

Subject: Re: Procedure for son

achalasia

Date: Monday, April 16, 2012, 9:54 AM

 

>

> Hi all-

>

> It's been a while since I've posted on here! Last time I think I mentioned my

sons appointment with his gi doc in October. His surgical scheduler called me in

December to let me know that she was working on setting a date for Devyn's upper

GI/ dilation ( we are up to dilation number 7 in 2 years) and I never heard

back! So I stalked her and she finally called me back. He is scheduled to go in

On the 17th. His surgeon will also be there to take a look and see if anything

needs to be revised ( he had a heller myotomy as well).

> I an curious if anyone knows if 7 dilations in 2 years seems excessive? I've

read plenty of your posts talking about the esophagus getting stretched too far

from too many dilations. I want him to have as much of a normal life as possible

for as long as he can! I don't want to do too much da

mage at such a young age, but I also don't want to see him panicking and rushing

for water every time he eats and the food gets stuck! Any advice/opinions are

welcome!

>

> Thanks,

>

>

> Sent from my iPhone

Hi , I haven't been on here, in quite some time. How old is your son?

My

son had a Heller myotomy when he was 6yrs old. He is 17 now. And he has

only

Had one dilation a few yrs after his operation.....what do they say the

reason is for

doing so many dilations?....My son says food always gets stuck, every time

he eats.

That's all he has ever known He drinks a ton of liquid every time he

eats.....soda

Pop seems to help food go down better, he says....His G I doc said it will

always be

hard for him to swallow. The heller myotomy and dilations don't really do

any-

thing for the muscles and nerves that push the food down. They just help

to open

up the sphincter muscle......Does your son take any medications? Mine

doesn't but

the doc wants to put him on a previcid type med. (Son doesn't want to) Doc

says

that Achalasia patients could get Cancer of the lining of the

esophagus....Doc seems to think the NCCP 's that my son Has been getting

for

years is acid reflux....was wondering what others out there thought.??? My

son

describes the pains as sharp, stabbing pains......Doc wants to scope him

and do a

biopsy of the lining of they E.S.......My heart goes out to you,.

As moms

it's so hard to watch our kids go thru this rare condition. My son doesn't

eat much

at school and it's got to be so hard for him to see other boys wulfing down

their

food ......he's very active in sports and I worry about his weight,

especially football!

If it was me, and the doc wanted to do so many dilations on my son, I

think I

would want to get a second opinion....wish you well,

>

[Guest guest]

wrote:

>

> ... I an curious if anyone knows if 7 dilations in 2 years seems

> excessive? I've read plenty of your posts talking about the esophagus

> getting stretched too far from too many dilations. I want him to have

> as much of a normal life as possible for as long as he can! I don't

> want to do too much damage at such a young age, but I also don't want

> to see him panicking and rushing for water every time he eats and the

> food gets stuck! ...

>

Even if they are excessive options are limited. The risk with doing

dilatations is not that the esophagus will become too stretched but that

the repeated stretching will cause changes in the tissue possibly

causing a perforation or rupture when stretched. Children seem to heal

much better than adults so the repeated dilatations may not take the

same toll they would if he was older.

I think finding out what the surgeons thinks after the procedure is

important. Ask him about the long-term plan, not just the next

dilatation down the road. The risks with the plan vs the risk of other

options.

notan

[Guest guest]

Thank Notan and Maureen! / Carolyn-

My son was diagnosed in 09 ( he was 9, 12 now) by his pediatrician and she

immediately sent us to Children's here in DC where he was immediately admitted.

Their first attempt at dilation was aborted because he was so malnourished his

stomach was bruised. Next was the NG tube which actually blocked his

stomach/esophagus completely because his LES was almost completely closed (

about the size of a coffee straw). So we proceeded with the series of dilations,

each time using a bigger size, but the most relief he got was about a month. I

told his GI it seemed fruitless to keep trying so he was scheduled for the

Heller. That was great for about a month but he was STILL getting food stuck! We

found out the wrap was too tight so he ha that taken down. This was all I the

course of about 3 months total. He's been okay since then. Takes Prevacid twice

a day. Food still gets stuck but ice water seems to help. Ironically soda only

works for him if it's flat!

, I worry about his weight too. He's so skinny I have always been able o

see his ribs! He eats, but he doesn't seem to gain weight. The surgeon is

suppose to be there tomorrow to see if he sees anything surgical. I guess I just

hold my breath and hope for the best. I have my list of questions ready though!

Thanks all for your input!

Sent from my iPhone

On Apr 16, 2012, at 10:54 AM, " troy_kittykat " <troy_kittykat@...> wrote:

>

>

>

> >

> > Hi all-

> >

> > It's been a while since I've posted on here! Last time I think I mentioned

my sons appointment with his gi doc in October. His surgical scheduler called me

in December to let me know that she was working on setting a date for Devyn's

upper GI/ dilation ( we are up to dilation number 7 in 2 years) and I never

heard back! So I stalked her and she finally called me back. He is scheduled to

go in On the 17th. His surgeon will also be there to take a look and see if

anything needs to be revised ( he had a heller myotomy as well).

> > I an curious if anyone knows if 7 dilations in 2 years seems excessive? I've

read plenty of your posts talking about the esophagus getting stretched too far

from too many dilations. I want him to have as much of a normal life as possible

for as long as he can! I don't want to do too much da

> mage at such a young age, but I also don't want to see him panicking and

rushing for water every time he eats and the food gets stuck! Any

advice/opinions are welcome!

> >

> > Thanks,

> >

> >

> > Sent from my iPhone

>

>

> Hi , I haven't been on here, in quite some time. How old is your son?

My

> son had a Heller myotomy when he was 6yrs old. He is 17 now. And he has only

> Had one dilation a few yrs after his operation.....what do they say the reason

is for

> doing so many dilations?....My son says food always gets stuck, every time he

eats.

> That's all he has ever known He drinks a ton of liquid every time he

eats.....soda

> Pop seems to help food go down better, he says....His G I doc said it will

always be

> hard for him to swallow. The heller myotomy and dilations don't really do any-

> thing for the muscles and nerves that push the food down. They just help to

open

> up the sphincter muscle......Does your son take any medications? Mine doesn't

but

> the doc wants to put him on a previcid type med. (Son doesn't want to) Doc

says

> that Achalasia patients could get Cancer of the lining of the

> esophagus....Doc seems to think the NCCP 's that my son Has been getting for

> years is acid reflux....was wondering what others out there thought.??? My son

> describes the pains as sharp, stabbing pains......Doc wants to scope him and

do a

> biopsy of the lining of they E.S.......My heart goes out to you,. As

moms

> it's so hard to watch our kids go thru this rare condition. My son doesn't eat

much

> at school and it's got to be so hard for him to see other boys wulfing down

their

> food ......he's very active in sports and I worry about his weight, especially

football!

> If it was me, and the doc wanted to do so many dilations on my son, I think I

> would want to get a second opinion....wish you well,

> >

>

>