moms with kids suggestions.

[Guest guest]

, if your network cannot provide you with an experience specialist, they

have to refer you OUT OF NETWORK!!!   This is a huge benefit in disguise.

Especially if you live in a small town or rural area... I know!

Next... I have heard from Dr. Richter today, he gave me some suggestions for the

east coast for Peds. 

I have emailed them and will see what comes back.

Carolyn

mom of Cameron

From: <grneyegrrl@...>

Subject: Re: Re: Malo and research and suggestions.

" achalasia " <achalasia >

Cc: " achalasia " <achalasia >

Date: Wednesday, March 9, 2011, 8:15 PM

 

Any suggestions on where I might find some names? I appreciate all of

this. I just sat my son down to talk and he told me even liquids are getting

stuck again. So the brave face is on in front of him and then I freak out behind

closed doors. We all know what that's like right? Thanks again guys this has

been a huge help for me

Sent from my iPhone

On Mar 9, 2011, at 10:23 PM, " Sandy " <sandycarroll@...> wrote:

> I totally understand about the cost, but it is absolutely critical you get the

best surgeon/gi combination. There are many stories here of members that had

achalasia as a youngster and maybe had less than wonderful treatment because

their parents just didn't know. comes to mind.

>

> I would even go out on a limb and guess that one of us would help you find a

place to stay if hotels are just out of the question.

>

> You CAN get out of the network! With persistence your insurance will refer you

out.

>

> Your son has already had enough work that may have made future treatments more

difficult. It is not the same problems as one of us over 50 faces.

>

> Look back on ' story, his mother Tonia.. they started out with a local

surgeon then tried another and even the last surgery has not been totally

successful. I don't think he is even 20 years old yet. Tonia doesn't come back

here much, but it has been very rough for them. Everyone is different, but they

stayed local for a long time before they went outside their area. No one knows,

but many of us have the opinion that if they had gone to experts earlier things

would be better now.

>

> I don't want to freak you out and seem heavy handed. Local doctors are great

at what they do, but achalasia takes a specialist with a lot of experience. If I

had to choose between things like cable tv, steak vs. hamburger, I would take

the less expensive choices and go out of network. It is the best investment you

will make in your son's future.

>

> Achalasia can be very depressing and we can become very isolated. Not only is

eating difficult, but even talking and breathing can become difficult because

the saliva doesn't go down our throats well and we can end up coughing to clear

our airways. having people make suggestions about what is good to eat,

suggesting Slim Fast or a blender makes us want to throw things at them... so we

just start avoiding people. It is hard for even us old ones. Can't imagine what

it is like for a young person.

>

> My surgeon's wife is a pediatric surgeon, so when he has done pediatric

surgeries he has his wife assist, even though she is in a different hospital.

>

> Please call one of us and arrange to meet one of us in person. I think it

helps a lot. There are some kids that pop in here every once in a while. There

is also a group on facebook. Personally i wouldn't want to type these things on

Facebook so like the relative privacy here more. Kids may feel the same.

>

> Sandy

>

>

> > > >

> > > > >

> > > >

> > > > > From: Malo <grneyegrrl@>

> > > >

> > > > > Subject: Re: child with recurring symptoms after Heller

Myotomy

> > > >

> > > > > achalasia

> > > >

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

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> > > > > 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?

> > > >

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

> > > >

> > > > >

> > > >

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

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> > > > >

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> > > > > > <achalasia >

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> > > > >

> > > >

> > > > > > Subject: child with recurring symptoms after Heller

Myotomy

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> > > >

> > > > > > > Hello all-

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> > > > > > > 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

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

supplements,

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> > > > > > > all of that. He had 4 dilations before they determined those

weren't

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

> > > >

> > > > >

> > > >

> > > > > > > He's been doing GREAT until recently. I've noticed the same

things: not

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

for a

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> > > > > > > drink while eating.

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

> > > >option?

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> > > >

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

me.

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> > > >

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

> > > >

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> > > > > > > appreciated!

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