Maureen

[Guest guest]

where are you located and who is your daughters surgeon? at this point, if she

is this bad off - she needs to get a consult with a TOP surgeon - pronto. She

should NOT have to live like this. I was 12 when I got A and it was no walk in

the park but I could function pretty normally. The problem comes from A being

rare enough and then 'extra' rare in a kid and there are few and far between

providers to do necessary procedures.

Please let her know that with proper treatment, she should go on to live a

mostly normal life. I was able to attend normal high school, college, I'm

married- I've had 2 pregnancies, I work - all the normal stuff - 30 years later.

It's not a death sentence but it needs to be treated properly. Let us know where

you are and we'll do our best to help.

Glad you found us!

~ in NC

[Guest guest]

My dh was talking about this just past weekend. Cleveland Clinic is

do-able...will check with insurance. Your all right....I missed the phone call

from the gastro's nurse yesterday.

________________________________

From: zlmmom1 <mcnairmichelle@...>

achalasia

Sent: Tuesday, May 17, 2011 7:10 AM

Subject: Maureen

 

Where you live - I would highly recommend you bypass anyone else you've seen and

go to one of 3 places.

Dr. Patti is in Chicago somewhere - someone can post his contact info or you can

search him - Carolyn's son Cameron saw him and everyone who goes to him raves.

Dr. Rice is at the Cleveland Clinic - does about 300 myo's a year - one

of the best of the best

My surgeon, Dr. Luketich at the University of Pittsburgh Medical Center -

the hospital itself is connected to a pediatric hospital - Dr. L is awesome and

the staff at the hospital are also very experienced.

As Notan said - top in gastro does NOT mean top in achalasia - these 3 I listed

are the best of the best - don't settle for anything else. Properly done surgery

- even a re-do - can make the difference and give your daughter her life back.

It is not uncommon to have the occassional post heller dilation but it sounds as

if she's getting no relief - seems to me there's something else going on.

I hope this doesn't sound TOO pushy - I just cannot stress to you enough the

importance of going to the best.

Please keep us posted

~ in NC