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Thanks for the good words, Barb. I have had a rough couple of days, but I am

still hanging on for dear life. There is a war going on inside my head

sometimes and it really wears me out. But I know that if I just don't pick

up and smoke, I have won the battle of the moment. This group has been so

wonderful in giving us the support to quit. I don't think that I could have

done it this long without you guys behind me.

Love and Hugs

Stacey in PA

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  • 3 years later...

Hi , I'm actually in Connellsville which is about 45 minutes or so from

you. My son is 7 and was diagonsed this past September at Childrens Hosptial.

What type of study is your son involved in? At what age was he dx? Has your

school been helpful? Sorry for all the questions but my sister teaches at

Latrobe Elem. and it seems from what she says her school is much better at

dealing with AS than mine seems to be so I'm just trying to see if I'm alone in

that sense.. Hopefully we can get together sometime.

( ) in PA

...

I am in Ligonier PA I have a son 16 who has AS. He participates in Dr.

Minshew's autism research at the University of Pittsburgh.

---

[This E-mail was scanned by Citizens Internet Services.]

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,

Ben was diagnosed with Asperger's in 3rd grade after not getting along with his

teacher, so we went to Children's Hospital. I knew he was different then my

other two sons but never could figure it out. He is on the high functioning end

of the scale. The LVSD has not been helpful. I have heard that Latrobe has an

excellent school district and I know someone who is an aide there. The only

person that was really helpful was his speech teacher who went to Latrobe school

district when he was in 6th grade. In fact, I cyber schooled him in 7th and 8th

grade. This year he wanted to try high school because cyber school was too

hard. He is doing better in school socially because he has matured so much these

past few years. I would enjoy talking to you. We will be in Connellsville for

the next two Sundays because my oldest son plays ice hockey and that is our home

rink.

I am only on the digest version so that is why I tool so long to reply.

---

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Hi ,

I would love to meet one of those Sundays you are here in Connellsville. If

you are going to Devito Park it is only about 5 minutes from my home. I

actually live on the road you take after turning up over the hill from 119. My

email is jewel929@... if you would like to contact me personally.

Thanks for replying and it would be wonderful to be able to talk with someone

who is going through the same thing.

( ) Re: in PA

,

Ben was diagnosed with Asperger's in 3rd grade after not getting along with

his teacher, so we went to Children's Hospital. I knew he was different then my

other two sons but never could figure it out. He is on the high functioning end

of the scale. The LVSD has not been helpful. I have heard that Latrobe has an

excellent school district and I know someone who is an aide there. The only

person that was really helpful was his speech teacher who went to Latrobe school

district when he was in 6th grade. In fact, I cyber schooled him in 7th and 8th

grade. This year he wanted to try high school because cyber school was too

hard. He is doing better in school socially because he has matured so much these

past few years. I would enjoy talking to you. We will be in Connellsville for

the next two Sundays because my oldest son plays ice hockey and that is our home

rink.

I am only on the digest version so that is why I tool so long to reply.

---

[This E-mail was scanned by Citizens Internet Services.]

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  • 2 years later...
Guest guest

,

Make sure that your browser allows javascript - if it's not on, you'll

get the following message:

JavaScript must be enabled in order for you to contribute to this wiki.

To start contributing, enable JavaScript by changing your browser

options, then try again.

Since you got to the page (you have to click through to your area of

the country), make sure you click on the EasyEdit button at the top of

the page. If you did all that and are still having issues try visiting

the EasyEdit help page -

http://www.wetpaintcentral.com/page/EasyEdit?t=anon

There's also a sandbox to play in at http://www.wikisandbox.com/ , but

you probably won't need that.

Hope this helps.

Lee in Atlanta

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Hello I'm just new at this ,, my name is Frances I'm in WA ( ft ) I have achalasia since 1996 (officially) I have a myotomy 1996 but didn't work 8 month later I need dilatation and have no movement and more trouble swallowing that before ,, since then I have lots of dilatation with a perforation in the stomach in 1999,, right now believed or not I'm 80 lbs overweight with achalasia I know but is true,, all my labs are fine ,, but in my last upper GI the DR want to take out my entire esophagus out ,, he said dilation will be hard because it keep fluid and is difficult ,, he have to clean during the sedation and he said is dangerous ,, Do any of you have your esophagus entire out ,, I don't want that I need to know all that is out there before taking so radical decision I m 34 mother of two ,, my husband is in the army and now he is deploy in Iraq ,, thanks I will like to Heard your opinions and

experiences ,, thanks ,,, Frances (WA)Lee Oppert <lee.oppert@...> wrote: ,Make sure that your browser allows javascript - if it's not on, you'llget the following message:JavaScript must be enabled in order for you to contribute to this wiki.To start contributing, enable JavaScript by changing your browseroptions, then try again.Since you got to the page (you have to click through to your area ofthe country), make sure you click on the EasyEdit

button at the top ofthe page. If you did all that and are still having issues try visitingthe EasyEdit help page -http://www.wetpaintcentral.com/page/EasyEdit?t=anon There's also a sandbox to play in at http://www.wikisandbox.com/ , butyou probably won't need that. Hope this helps.Lee in Atlanta

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Guest guest

Hey Frances- welcome to our group. Sorry you have A but we're glad

you found us. Your story is very familiar to many of us. I myself

just had my E removed this past Jan. and I'll tell you, the first 2

months really sucked but now - I'd do it again in a heartbeat. It is

scary to think about having your E removed but there are about a

dozen or so of us that have had it done in the last 2 years or so and

for the most part, we're all doing great. Most of us are in our 30's-

40's. I just turned 40 and am the mother of 2 girls, ages 3 and

almost 6.

Just make sure you get as many opinions as possible - at least 2 or 3

and then go to the best surgeon you can. Are you limited to using the

military surgeons? You may want to investigate getting 'champus'd'

out (do they still call it that? My first husband was Navy) or at the

very least - fight for the most experienced military surgeon you can

find. Find one who has done 50-100 ectomies and has experience with

the minimally invasive surgical techniques. The most likely

experienced candidates do -ectomies for cancer so you should be a

treat for them!! If you are otherwise healthy, the success rates are

very high. I even had some complications (that are getting fixed) but

I'm eating about 2/3 to 3/4 of a normal sized meal now, my weight has

stabilized at a healthy 116 lbs (I'm 5'3 " ) and last night I drank 2

glasses of wine and don't have to worry about having spasms!! In

fact, I'll never have spasms again - woo hoo!! That alone makes it

all worth while.

Please ask questions and do some research here. If you type ectomy in

the search box, you should find TONS of posts from all of us, our

personal stories, some EXCELLENT research and good doctor

recommendations. There are some excellent surgeons in your area if

you can go civilian.

Unless this is an emergency, take some time 'digesting' it all and

getting yourself ready. Ask questions and read, read, read. It helped

me tremendously to have this group and to lean on the people that had

gone before me. I was very prepared mentally for the challenge of the

surgery and felt very well informed - it really helps.

We're here for you!

- in NC

achalasia free since Jan. 11th

> ,

>

> Make sure that your browser allows javascript - if it's not on,

you'll

> get the following message:

>

> JavaScript must be enabled in order for you to contribute to this

wiki.

> To start contributing, enable JavaScript by changing your browser

> options, then try again.

>

> Since you got to the page (you have to click through to your area of

> the country), make sure you click on the EasyEdit button at the top

of

> the page. If you did all that and are still having issues try

visiting

> the EasyEdit help page -

> http://www.wetpaintcentral.com/page/EasyEdit?t=anon

>

> There's also a sandbox to play in at http://www.wikisandbox.com/ ,

but

> you probably won't need that.

>

> Hope this helps.

>

> Lee in Atlanta

>

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Guest guest

Hi ,

Were you on the Pennsylvania page? He's already there:

http://achalasiadoctors.wetpaint.com/page/Pennsylvania

in PA

> Hey - I tried adding Dr. Luketich to the Wiki and

> couldn't. not

> sure what I'm doing wrong.

> I pulled up the template but it wouldn't let me add any info.

> any suggestions?

>

> - in NC

>

>

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

>

>

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Guest guest

Hey - yeah, I found him there AFTER I wrote you the email. I

just emailed his staff to find out how many myo's he does yearly,

when I get an answer - I will try again to update the listing.

Hopefully, I'll figure it out this time.

Lee posted something about a 'sandbox' - excuse my ignorance but what

is a sandbox?

- in NC

>

> Hi ,

>

> Were you on the Pennsylvania page? He's already there:

>

> http://achalasiadoctors.wetpaint.com/page/Pennsylvania

>

>

>

> in PA

>

>

> > Hey - I tried adding Dr. Luketich to the Wiki and

> > couldn't. not

> > sure what I'm doing wrong.

> > I pulled up the template but it wouldn't let me add any info.

> > any suggestions?

> >

> > - in NC

> >

> >

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

> >

> >

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Guest guest

wrote:

> ... what is a sandbox? ...

>

A place you can play in, where nothing is permanent. In the wiki sandbox

you can try wiki ideas without having to clean up any mistakes. Good for

testing layouts and widgets.

notan

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