Re: Sima- children with , questions to be asked.

[Guest guest]

There are only so...many possible fixes for achalasia and with my 12 y/o

daughter we did dilations first...granted they did not work as it was critical

to get fluids and food in her at the time but...certainly I would try them b4

surgery. It was the least invasive...

From: Carolyn H <wooleeacre@...>

Subject: Sima- children with achalasia, questions to be asked.

achalasia

Date: Thursday, September 15, 2011, 12:45 PM

 

>>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!

> > > >>

> > > >

> > > >

> > >

> > >

[Guest guest]

Hey Mike, you are so right.. there are only so many choices.  I think you meant

.. [they DID work] with your daughter.. (?)

The consideration is the age of this child. 

My questions to you are ... How many stretches over how long of a period for

your daughter?

Who were her surgeons,

How long ago

Please share with us and did you put her surgeon on the database??

Thank you for your insight.

Carolyn

My thoughts about  >invasiveness<  it can come ... once as in a surgery... or

multiples as in more than once a year for stetches?

From: Carolyn H <wooleeacre@...>

Subject: Sima- children with achalasia, questions to be asked.

achalasia

Date: Thursday, September 15, 2011, 12:45 PM

 

>>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!

> > > >>

> > > >

> > > >

> > >

> > >

[Guest guest]

I know nothing about children and achalasia. When I contemplated getting a

dilation to even drink water while I waited for surgery, my surgeon strongly

vetoed it because he said the scar tissue caused by dilation makes the subset

much harder. Of course kids are different than the middle aged body he has to

work with on me. And each person. Has different surgical risks.

That said-- surgery seems to be the preferred option in the literature and among

people in this group.

It was very hard to make these decisions for myself-- I am sure ib is even more

difficult to make them for your daughter. Perhaps an informed 2nd opinion from

another Achalasia expert, GI motility dr or surgeon, is in order.

On Sep 15, 2011, at 11:07 AM, Carolyn <wooleeacre@...> wrote:

>

> Hey Mike, you are so right.. there are only so many choices. I think you

meant . [they DID work] with your daughter.. (?)

> The consideration is the age of this child.

>

> My questions to you are ... How many stretches over how long of a period for

your daughter?

> Who were her surgeons,

> How long ago

> Please share with us and did you put her surgeon on the database??

> Thank you for your insight.

> Carolyn

>

> My thoughts about >invasiveness< it can come ... once as in a surgery... or

multiples as in more than once a year for stetches?

>

>

>

> From: Carolyn H <wooleeacre@...>

>

> Subject: Sima- children with achalasia, questions to be asked.

>

> achalasia

>

> Date: Thursday, September 15, 2011, 12:45 PM

>

>

>

> >>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!

>

> > > > >>

>

> > > > >

>

> > > > >

>

> > > >

>

> > > >

[Guest guest]

oh boy... now I am starting to worry...

she had some dilatations (at least 2) before being diagnosed with ach.

and she had a really aggressive one since being diagnosed.

she still has throw up sessions though... Dr. Nurko kind of implied that she can

keep on having dilatations for the rest of her life if they help...

but in the back of my mind I think... " well theres always surg. "

From: Carolyn H <wooleeacre@...>

achalasia

Sent: Thursday, September 15, 2011 1:45 PM

Subject: Sima- children with achalasia, questions to be asked.

 

>>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!

> > > >>

> > > >

> > > >

> > >

> > >

[Guest guest]

Hi Sima

My son was diagnosed at 9 with severe achalasia. We also did the dilations. He

had 6 before we went with the surgery. The longest relief he got from the

dilation was about a month. Since they kept using larger and larger catheters to

dilate I was worried about a perforation. Plus I didn't want my son to endure so

many procedures so early in life. I agree with the group that they are a great

start because they are minimally invasive, but if they aren't working surgery

might be the best option. But we can only speak for what we would do! She is

your child and mom knows best! Whatever you decide I wish you the best. And this

group is amazing for support and resources!!! Glad you found it

Sent from my iPhone

On Sep 15, 2011, at 6:58 PM, Sima er <simafeiger@...> wrote:

> oh boy... now I am starting to worry...

> she had some dilatations (at least 2) before being diagnosed with ach.

> and she had a really aggressive one since being diagnosed.

> she still has throw up sessions though... Dr. Nurko kind of implied that she

can keep on having dilatations for the rest of her life if they help...

> but in the back of my mind I think... " well theres always surg. "

>

> From: Carolyn H <wooleeacre@...>

> achalasia

> Sent: Thursday, September 15, 2011 1:45 PM

> Subject: Sima- children with achalasia, questions to be asked.

>

>

>

> >>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!

> > > > >>

> > > > >

> > > > >

> > > >

> > > >

[Guest guest]

From the time we noticed some issues with her swallowing in Sept. to November it

became acute...it was finally diagnosed the end of November and we did not get

the surgery until Feb. During that time we had 2 dilation's from Nov-Jan. and

neither worked for her as she was not keeping anything down. From Nov-Feb I

ended up in 4 ER rooms getting her hydrated. The last straw was when she passed

out and became unconscious and we were 2 wks away from surgery. We almost put a

feeding tube in her to keep her hydrated. I was very thankful for Childrens

Hosp. for reaching the diagnosis of achalasia but in hindsight I did not realize

that their were specialists until I became aware of this forum. The failure rate

of myotomy's in children are higher. We have had 2 dilitations this year. I have

met with Dr. Patti in Chicago in June in order to have her assesed. Right now

she is doing fine and part of the issues we have occasionally have to do with

her eating foods

that do not go down well. But certainly I would look at every alternative b4

surgery. I think the key is to find the right specialist for a child...it is

imperative as their issues and health for their adult life all hinges on correct

diagnosis and plan. You have only so many alternatives and not to play all your

cards as you will leave less options in the future. I keep telling my daughter

we need to manage her issues...there will never be any quick fixes and this is

something you need to live with. Maureen Young

From: Carolyn H <wooleeacre@...>

Subject: Sima- children with achalasia, questions to be asked.

achalasia

Date: Thursday, September 15, 2011, 12:45 PM

 

>>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!

> > > >>

> > > >

> > > >

> > >

> > >

[Guest guest]

Hi Sima,

I was told dilations were for older adults. They don't last as long as the

surgery. My doctor specialize in Thoracic surgery (chest). It includes, reflux,

Total Minimally Invasive Esophagectomy. You may want to try the Mayo Clinic or

the Cleveland Clinic. They specialize in this disease. Both Clinics have

locations in different states. Check their websites for other locations unless

you can travel to their Head clinics.

>

>

>

> > > > >>

>

>

>

> > > > >> 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!

>

>

>

> > > > >>

>

>

>

> > > > >

>

>

>

> > > > >

>

>

>

> > > >

>

>

>

> > > >