Mom of

[Guest guest]

Dear and ,

I know the pain and despair you are feeling. You child is unique and special.

If you are considering seeing a specialist, I would recommend to you.. Dr

Pellengrini at Seattle. So many people read the posts and think Cleveland is

the only place. slow down.. take a breath.. and read ... from the group

site.

The other specialist that is top in the world is Dr. Marco Patti in Chicago. He

was my son's specialist.

These two men have great compassion and will take the time to answer the

questions you may have.

It is extremely rare that a child would present these 3 things at the same time

by 5 years old. Unfortunately, in the most compassionate way I can say.. today,

there is no cure. When my son was diagnosed in 2005, I researched and read every

medical paper I could get my hands on. But be comforted there are specialists..

and a specialist is what you NEED..

I am sure you probably have your child sleep elevated. Have you had any bouts

with aspiration pneumonia? I am assuming you are in Reno or Las Vegas? Look

at the site for references on Surgeons and Specialists. On the Achalasia

site, in the messages area, search the messages with the word pediatric or

atresia, or another key word to have messages come up related to your needs.

Also look at www.reflux.org for some info on the trachea part of your

research.. they do not seem to have any issues that i have seen with Achalasia

or Mega-esophagus.

What were the factors in the determination of

1) Achalasia 2) Tracheal Malacia 3) Mega-Esophagus

If you want some referrals for Peds Achalasia, let us know.. I will find some

one of expertise!

look who is writing the articles and get their emails.

These specialists will very often respond to emails and phone calls!!! They can

help you by the history and your endoscopy!

Some of the key words you can use are:

" pediatric " dysphagia, motility disorders, swallowing disorders, myotomy,

fundoplication, esophageal atresia "

____________________________________________________________________

Located at U of WA. is Neil K. Kaneshiro, MD, MHA

Dr. Pellegrini Chair, dept of surgery, director, swallowing center. 206

598 4477 pellegri@...

UCLA Los Angeles, CA Dr. Vargas Pediatric GI 1-310-825-5803

UCLA Los Angeles, CA Dr. Dunn Pediatric Surgeon 1-310-206-6134

Laparoscopic Hellers Myotomy w/ Partial Fundoplication

Molly O'Gorman Pediatric Gastroenterology, Department of Pediatrics, The

University of Utah

Primary Children's Medical Center, 100 N. Capecchi Dr., Suite 2650, Salt

Lake City, UT 84113

Phone: 801-662-2900, Fax: 801-662-2912

______________________________________________________________________

clipped from a past post .........

" Remember what ever is done.. is just that ... done... take your time and read

and research, google scholar is good for pediatric achalasia, it is EXTREMELY

RARE!