Taniea/ Shimira-MOM's, Notan.. weigh in!

[Guest guest]

Hi Shamira,

I will apologize to start for my harshness...

But....    ABSOLUTELY NOT! NO ECTOMY!!!

ok it is out.. I would rather it said I am out of line, than to suggest again..

get to the best..  I know she is in pain, and having problems swallowing..

but....

Like I have mentioned to you before, first you need to get her to a top notch

specialist.. she needs to be assessed first, by a super qualified Experienced

Achalasia Specialist. Scoped- looked at what is happening at the juncture.

 What ever has been done... is done..   Moving forward...

Ectomies are not done frivolously. They are last result. ( of no offense to

anyone here who has had or considering one)

She is but a young child, not yet to puberty, and no matter what- she needs the

best care that can be given. I hope you have had the opportunity to contact the

specialists I sent you.  Dr Patti recommended Pellegrini to you too.. I am sure

he will talk to you.. , Tia's mom also will give you good insight here.

Your doctor intimated that he may have made too small of an incision, therefore,

you need to actively be researching " the cut " and talking and looking for a

good, scratch that... a GREAT peds specialist.

IF YOU ARE NOT GIFTED TO BE A BULL DOG .. Find a friend or family member who

is.. and fight.. for everything..

Do you need travel money? It is ever so presumptuous of me to ask... but can

this group help? 

 Everything we do for Achalasia is forever, there is no going back .. so with

great trepidation, every one takes baby steps... with good reason. ...

Please only consider or entertain an " ectomy " if the best of the best say it is

neccessary for her " quality of life " ... She is but a child, with a long road to

go.

Carolyn

mom of Cameron..

myo'd and fundo'd  '05

I wrote " who knew the delicate

nature and the importance of " the CUT " .. it is everything... It is

everything... Perhaps no one says that too much on the group site, but

the length and position of the myotomy (the cutting of the sphincter) is

everything. How many children has this guy done? Her peristaltic motion

of the esophagus is gone, it was gone before the myotomy and it was

really gone after, so what is the point of the torture of the manometry?

She needs to have an endoscopy right away to see if she has an ulcers

forming, scar tissue growing, and constrictures going on, and maybe a

biopsy!!!! that is the starting point. then a barium swallow. Ask the

group, talk to Notan but I just think she is a little girl and not to

subject her to any more needless tests by ninnies who don't have all the

answers. It is 800 miles from you to Chicago.. 16 hours driving.. or

....

Here are the Dr. at Baylor in Houston...

BRUNO CHUMPITAZI, M.D., M.P.H. chumpita@...

Assistant Professor

Department

of Pediatrics-Gastroenterology, Hepatology and Nutrition Baylor College

of Medicine Director of Neurogastroenterology and Motility Center

Texas Children's Hospital

Kansas City - Children's Mercy Hosp

Holcomb, MD

Administrative Assistant: Jeannette Whitney, (jwhitney@...), 816-234-7002

http://childrensmercy.org/content/view.aspx?id=9482

***BE

Sure to read the authors of this article and the article. You will see

Dr. Patti co Authored this with some of the folks from Kansas. and Dr.

Way.

The article is very good. "

http://www.childrensmercy.org/Content/UploadedFiles/lap.pdf

If you need some other close contacts let me know.. I will find them...

http://www.childrensmercy.org/Content/UploadedFiles/lap.pdfwww.childrensmercy.or\

g

From: shareedanieal <shareedanieal@...>

achalasia

Sent: Wed, February 23, 2011 2:22:01 PM

Subject: Taniea

I am wondering what the groups thoughts are on Taniea having an ectomy. I have

been reading and some seem to act to like it an ectomy gave them better results

then the myotomy. With surgery being a possible treatment plan I was thinking

it may be easier to just get an ectomy? I don't know if its even an option. I

also wondering what the pro's and con's are of having an ectomy. What is

dumping, ect?