child with recurring symptoms after Heller Myotomy

[Guest guest]

Hello, and welcome to the group.

I see you are in New York! you say your specialist is amazing? is he pediatric?

What is his background and what has he suggested.

do you know about Pager? http://www.reflux.org/

Has your surgeon been with you all along?

My question is this, in the original note you say he had 4 dialations,

the second not says " another myotomy " .  Has he had a myotomy?

What age was this? did he have a fundo with it? Was there a growth stitch put in

place?

If he had the myotomy, was the surgeon a pediatric specialist with a lot of

experience? What did they say the condition of the esophagus was in, after 4

dialation at a young age?

He will have this his whole life, and we do what we can to help them get to a

place where their quality of life is good! We work and read and question and

research, but it comes down to having the finest care possible because of the

rarity of this disorder. We CANNOT slack off, not for a moment. It is paramount

we do all we can for our children.

My son had an OPEN procedure in 2005. He has done better, I think because it was

open. His surgeon was able to physically " see " the cut and do the fundo which I

think helped. The recovery time was much much longer, but comparitively speaking

he has done extremely well.

I would NOT allow any more dilations, until I had another opinion. I would not

have thought they would do a dilation on a child so young.  Please let us know,

who your specialist is.  do you need help for a second opinion?  What are the

options they have spoken to you about your child's condition?

Are you an aggressive parent? Do you have an advocate? It does break our

heart... but our children are gifted with Fortitude. We have to help them to the

best of OUR ability. We advocate for them.

Let me know how any of us can help you.

Carolyn

mom of Cameron

myo'd and fundo'd in 05

From: Malo <grneyegrrl@...>

Subject: Re: child with recurring symptoms after Heller Myotomy

achalasia

Date: Tuesday, March 8, 2011, 8:12 AM

 

He's 11 now. We live in DC. The doc we have is amazing. He's been treated

at Children's Hospital for the length of this. The dilations have never worked

in the past. He had a lot of scar tissue that they were never able to break. My

fear of course is another myotomy. I really just want him to not have to deal

with this anymore. It breaks my heart to see him like that, and it's unbearable

to see him after surgery. It's one of those things that as a Mom you can't make

better, you know?

> From: " Malo " <grneyegrrl@...>

> Sent: Tuesday, March 08, 2011 10:43 AM

> <achalasia >

> Subject: child with recurring symptoms after Heller Myotomy

>

> > Hello all-

> >

> > New to the group here and hoping to find some info/support, really

> > anything at this point. Can't find a lot of info on the web.

> > My son was born w/achalasia but wasn't diagnosed until he was 9. He was 56

> > pounds when we found out. We've gone through feeding tubes, supplements,

> > all of that. He had 4 dilations before they determined those weren't

> > working. He finally had a myotomy about 2 years ago.

> > He's been doing GREAT until recently. I've noticed the same things: not

> > eating a lot, frequent trips to the bathroom during meals, rushing for a

> > drink while eating.

> > We go back to the doctor in a week. My question is what's the next option?

> > I read something about an open Heller's Myotomy, which terrifies me.

> > Has anyone else been through this? Any advice would be greatly

> > appreciated!

> >

>