Re: Five Year Old Daughter With Achalasia- east coast

[Guest guest]

Hey Carolyn-

you are amazing! I can't believe you spent so much time researching my

daughter's situation! I am really happy with Dr. Nurko. He is not my daughter's

first GI by a long shot. We had a GI in Westchester Medical Center, and one in

Columbia's Children's Hosp. in NY, and Dr. ph Levy of NYU who is quite

famous, and is the one who recommended Dr. Nurko to begin with.

My daughter is quite healthy and does not have failure to thrive at all. She is

in the 50th percentile on the regular charts (remember she also has Down's

Syndrome, and those kids are usually quite small at first) and she is not at all

chubby, so I'm pretty happy with that.

Nurko does recommend dilations at first, aggressive ones, before trying surgery,

and that is why I am following that plan.He said he ususally does at least 3

before doing surgery. That sounded pretty reasonable to me, especially since

it's a fast outpatient procedure and 100% pain-free. She had one and is

still having " throw-up days " several times a month, so I am going to do another

soonish. (As soon as I can get her to Boston-- I am due in a week!) Do you not

think this is a good plan? You seemed to think it a negative thing that he is

into dilatations...

(botox I dont think is for her-- too temporary? he didnt either recommend it)

Sp please let me know whether or not you think this plan is ok...

THANK YOU!!!

From: Carolyn <wooleeacre@...>

achalasia

Sent: Wednesday, September 14, 2011 5:49 PM

Subject: Five Year Old Daughter With Achalasia- east coast

 

After reading a number of articles, I see your physican Nurko is pretty well

published. My concern is that he is extremely pro botox and dilation.

He has spoken at a number of conferences regarding botox in children as a

response to different conditions. Below are a few specialists I have run across

in a number of articles and conferences.  These are top notch when it comes to

motility disorders...

you can email them be sure to give them your phone and ask them to call you or

email you..  Especially try Hempker... she has responded well in the past.

If you child is having a " failure to thrive " issue .. tell them it is very

important.

good luck..

Please let us know your results..

Carolyn

mom of Cameron..

B. Grossman, Division of GI, Hepatology, and Nutrition, The Children's

Hospital of Philadelphia; The University of Pennsylvania School of Medicine,

Philadelphia, Pennsylvania Author's email: grossmanan@....

Markowitz, University of South Carolina School of Medicine; Children's

Center for Digestive Health, Greenville Hospital System University Medical

Center, Greenville, South Carolina.

Kathleen M. Loomes,  The Children's Hospital of Philadelphia

Division of Gastroenterology, Hepatology and Nutrition, 7th floor

34th and Civic Center Blvd.

Philadelphia, PA 19104

Office: 267-426-7223

Fax: 267-426-7814

Email:

loomes@...

 University of Pennsylvania School of Medicine, Philadelphia, Pennsylvania;

Division of Gastroenterology, Hepatology, and Nutrition, The Children's Hospital

of Philadelphia, Philadelphia, Pennsylvania.

A. Piccoli, Division of Gastroenterology, Children's Hospital of

Philadelphia, University of Pennsylvania School of Medicine, Philadelphia,

Pennsylvania.

Center for Esophageal Diseases and Swallowing, University of North Carolina

School of Medicine, Chapel Hill, NC

Phone: (919) 966-2513, Fax: (919) 843-2508, Email: edellon@...

American College of Gastroenterology

P.O. Box 342260

Bethesda, MD 20827-2260

Telephone: 301-263-9000

 Hayat Mousa

Gastroenterology, Hepatology and Nutrition, 

Columbus Childrens

Hospital, Columbus, OH, USA.

http://www.nationwidechildrens.org/Hayat-M-Mousa

  Oliva-Hempker  Phone: 410-955-8769

Fax: 410-955-1464

***Email: moliva@...

Carmen Cuffari

April Troy,

 

 Kathleen Schwarz

 Peds GI,

  Peds GI, s Hopkins University, Baltimore, MD

Gelfond , Samra Blanchard , Anjali Malkani

Pediatric Gastroenterology, University of land, Baltimore, MD, USA.

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> > >

> > >>

> > >> To the achalasia group:

> > >> Hi I am new to this group! I have a Down's Syndrome daughter who is

> five years old, and who after throwing up her whole life, was diagnosed in

> May with achalasia. She would eat something (mostly I noticed it with

> rubbery foods, like hot dogs, eggs, pasta etc., but other times it was any

> food, even well chewed foods, or even liquids!) and suddenly she changes

> into a different person. She is usually a cheerful cutie, but at these

> times, she becomes withdrawn and very sad, and will just lay on the floor

> drooling and foaming, and eventually throw up undigested food. Once it comes

> out she is immediately better, but sometimes she will throw up undigested

> food for a few days in a row. Other times she can go a few weeks with no

> problems. She takes prevacid every day which seemes to help at first-- now I

> am not so sure, but they want her on that forever so that acid wont damage

> the esophagus further. She has had a few dilatations, and I guess they have

> helped

> > somewhat... it is hard to be sure.

> > >> My reason for writing to you all is this-- while my daughter is

> unusually bright and high functioning for a 5 yr old with Down's, she still

> is a 5 yr old with Down's!! She tells me I am not feeling good, or i need to

> throw up, but thats it. I need some guidance from adults who have this. What

> does she feel when she stops eating and drools? Is it nausea? Why does she

> drool? Why does she sometimes want us to gag her to help her throw up? Is

> there something else to do instead of gagging her? What foods should we

> avoid? What helps during before after meals? What are spasms? How do I know

> if she is having them? Should I do more balloon dilatations, or a surgery? I

> am sure I have more questions but Ill leave it at these for now... any

> replies would be MOST APPRECIATED! Our Dr. is fantastic ( Nurko from

> Children's Hosp. of Boston) but he does not have achalasia! Thank you

> everyone!!! I feel so lucky to have someone to talk to who understands me at

> last!

> > >>

> > >

> > >

> >

> >