Sima- children with , questions to be asked.

[Guest guest]

>>Do you not think this is a good plan? You seemed to think it a

negative thing that he is into dilatations...<<.

____________________________________________________________________

Hi,

Thank you for asking... It is purely my opinion, but from my

perspective, my own child's surgery, others, reading multitudes of

papers, etc. It is my opinion, that on a child it is NOT recommend as a

remedy for achalasia. Stretching the esophagus at the LES does exactly

that, and because of her age, she has a very long way to go in life, if

it becomes over stretched, surgery ( myotomy ) becomes difficult to do

with the results not being as desirable. Possibly a long way down the

road this can result in an esophagectomy.

A myotomy places a strategic cut on the outside of the heavy ban of

muscle that has clamped shut. With a myotomy, an extremely skilled

surgeon will make a specialized cut and untangle the nerve bundle that

is telling the LES to close. Think of it this way... I am hoping this

will work for you living near the coast...

Imagine a sea anenome. Have you ever poked one? when the anenome is

open the food passes into it. As something passes that initial ring of

little feeler arms it closes up. Imagine if it stayed closed. the Nerve

center is telling it to stay closed tight.. the more we try to force it

open the more it wants to stay closed. A skilled surgeon places the cut

on the outside of the band in such a way, that the muscle relaxes and

opens. the nerves.. untangled from the stranglehold now allow the LES to

remain open. He has created a reflux or gerd situation... The

fundoplication a very common remedy for children with GER is often

perform after to keep the acids and foods from squeezing back up the now

open LES .

Surgeons have found that after a numer of stretches, they can no longer

performed optimally.

The questions we have to ask for our children is ...

How many stretches can a very young child have?

what does the longer term look like at the age of 10? 13 puberty 18?

25, 40, 60?

The hard question is ... what is the quality of life?

What can we expect to happen in the short term, long term?

What is the worse case scenario, best case?

Do you recommend Botox? yes or no ( children this is a NO ) WHY

Do you recommend Dilatation ( children this is a questionable NO ) WHY

Do you recommend Myotomy? yes or no ( accepted method ) WHY

Do you recommend Fundoplication yes or no ( accepted in some cases

common in children) WHY

The list I gave you is for your reference... Like so many of us have...

query them.. email, call, or whatever.. but ask them...

Most will ask if you can email the records ( endo and mano ) and they

will tell you exactly what they think...

The very nature of this disorder and it's rarity dictates the best of

the best... they are mostly willing and eager to speak to you...

**Note to those research oriented... I found a number of papers written

on the incidence of Downs with Achalasia presenting in children, makes

me ponder possible association..

Carolyn

Mom to Cameron

myo'd and fundo'd in 05.

> > > >>

> > > >> 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!

> > > >>

> > > >

> > > >

> > >

> > >