Re: Five Year Old Daughter With Achalasia

[Guest guest]

One counterintuitive thing about food is that toast is better for us than plain

bread. Spaghetti can be rough, too. There is information on the site about foods

that give us trouble and that we have better luck with.

Dan

Sent from Smrtphone That Lacks Spellchecker

Carolyn H <wooleeacre@...> wrote:

>Hello! As a mom of a child with achalasia, I feel your pain, concern, fear. In

Boston is Dr. Lutecek (sp ) check in the data base, if he is not there get hold

of me and I will find him. Do not allow this child to lay on her back. Please

please get ahold of a specialist right away. I would be happy to talk to you.

Also go to reflux.org and read some of the stories there. Achalasia is not

known so much but your fear and angst is. These kids have had fundos too and

their moms are amazing. The worry is the possibility of aspiring food into the

lungs. She has had dilations??? Hmmm. Didnt know they had bougies that small.

Please again if I can be of help let me know. You are looking for a pediatric

achalasia specialist. Carolyn mom of Cameron... Myo'd and fundo'd in 2005.

>

>

>>

>> 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is usually a cheerful cutie, but at these times, she becomes withdrawn and very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 carolyn...

I dont live in Boston, I live in NJ. I traveled to Boston for Dr. Nurko

to do a manometry, apparently there are very few dr.s in the US who do

manometry's on 5 yr olds! Is there actually such a thing as a Dr. who ONLY

specializes in achalasia? A pediatric one too? That would be amazing!!!

Why can she not lay on her back? and how do I prevent that while she's sleeping?

What is myo and fundod?

THANK YOU!!!!

From: Hoffman <rp518dan@...>

achalasia

Sent: Monday, September 12, 2011 6:36 AM

Subject: Re: Five Year Old Daughter With Achalasia

 

One counterintuitive thing about food is that toast is better for us than plain

bread. Spaghetti can be rough, too. There is information on the site about foods

that give us trouble and that we have better luck with.

Dan

Sent from Smrtphone That Lacks Spellchecker

Carolyn H <wooleeacre@...> wrote:

>Hello! As a mom of a child with achalasia, I feel your pain, concern, fear. In

Boston is Dr. Lutecek (sp ) check in the data base, if he is not there get hold

of me and I will find him. Do not allow this child to lay on her back. Please

please get ahold of a specialist right away. I would be happy to talk to you.

Also go to reflux.org and read some of the stories there. Achalasia is not known

so much but your fear and angst is. These kids have had fundos too and their

moms are amazing. The worry is the possibility of aspiring food into the lungs.

She has had dilations??? Hmmm. Didnt know they had bougies that small. Please

again if I can be of help let me know. You are looking for a pediatric achalasia

specialist. Carolyn mom of Cameron... Myo'd and fundo'd in 2005.

>

>

>>

>> 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]

Hello again,

There are specialists for achalasia!!! This is what this group is all about..

Helping people find them. They are rare, famous, specialized and spread around

the world.

If your Dr. Nurko was good at the manometry, she was not too affected. I am

going to assume they did an endoscopy too? Do you have these two records on a CD

or pictures? and a report?

I will see what I can do for some names for you.. Achalasia especially in YOUNG

children do require some travel.

The myotomy is a very very specialized cut in the lower esophageal sphincter

which releases the muscles grip on the opening to the stomach. It necessitates

the sphincter staying open all the time creating a " gerd " situation. The

fundoplication is a tipping of the stomach up and a portion sewn back to the

esophagus to create a hard turn so the stomach acid does not back up into the

esophagus.

Sleeping on the left side helps to keep the contents of the stomach in the

stomach as it is on the left side. She should have a clear Esophagus before

laying down to sleep. Aspiration of food is a very real possibility as your

daughter may inhale some particles while sleeping.

It is very difficult to keep her off her back, but knowing she has a clear " E " "

can help. Elevate her head end of the bed a few inches this can help also.

You can email me also. I am on the west coast. Meanwhile I will do some

research. Are you able to travel? specialists will be more than happy to talk

to you by phone or email. also you should have all her records.

Happy to help.

Carolyn

mom of Cameron in CA

wooleeacre@...

> >>

> >> 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]

Very sorry to hear about your little girl!  I have achalasia, the problem with

our condition is that the esophagus doesn't work, so nothing helps " push " the

food down when we eat, that is why she gets " foam " and pain.  A spasm is when

the esophagus gets something like a cramp, doctors do NOT know why this happens,

it can happen often or rarely.  Drinking or eating something, even a bite or

two can stop a spasm if caught early, otherwise it will go into a full force

cramp and it's very painful.  The minute I would feel one coming on, I had to

have water with me at all times. 

 

Sleeping is usually propped on two pillows to avoid liquid coming up while

asleep, this would happen to me all the time and I would awake chokking.  By

using a couple pillows you can help her with gravity, it's strange but it

works. 

 

Always toast bread, if crispy then it seems to go down easier.  Always have

something for her to drink with meals.  I always had a tall glass of water or

soda and would take strong sipes inbetween bites of food.  The liquid kinda

helps force the food down little by little, it's such a process and some days it

works and other days everything fights to come back up and we vomit up meals

often.  A very frustrating illness. 

 

I could NEVER eat a sandwich, just an open face half slice toasted with alittle

peanut butter, would give me some energy on bad days.  Cut things up small for

her and avoid thick things like rolls, banana's, or even tortilla must be

toasted and crispy.  Lots of soup!! 

 

I sure hope you can find an expert childrens doctor and she would have surgery,

that is what finally " fixed " me and I can eat now and feel so much better. 

Please keep us posted, best wishes!  Glad that you found this group! 

 

Julee So. Calif.

 

 

From: Sima er <simafeiger@...>

" achalasia " <achalasia >

Sent: Monday, September 12, 2011 6:39 AM

Subject: Re: Five Year Old Daughter With Achalasia

 

hey carolyn...

I dont live in Boston, I live in NJ. I traveled to Boston for Dr. Nurko

to do a manometry, apparently there are very few dr.s in the US who do

manometry's on 5 yr olds! Is there actually such a thing as a Dr. who ONLY

specializes in achalasia? A pediatric one too? That would be amazing!!!

Why can she not lay on her back? and how do I prevent that while she's sleeping?

What is myo and fundod?

THANK YOU!!!!

From: Hoffman <rp518dan@...>

achalasia

Sent: Monday, September 12, 2011 6:36 AM

Subject: Re: Five Year Old Daughter With Achalasia

 

One counterintuitive thing about food is that toast is better for us than plain

bread. Spaghetti can be rough, too. There is information on the site about foods

that give us trouble and that we have better luck with.

Dan

Sent from Smrtphone That Lacks Spellchecker

Carolyn H <wooleeacre@...> wrote:

>Hello! As a mom of a child with achalasia, I feel your pain, concern, fear. In

Boston is Dr. Lutecek (sp ) check in the data base, if he is not there get hold

of me and I will find him. Do not allow this child to lay on her back. Please

please get ahold of a specialist right away. I would be happy to talk to you.

Also go to reflux.org and read some of the stories there. Achalasia is not known

so much but your fear and angst is. These kids have had fundos too and their

moms are amazing. The worry is the possibility of aspiring food into the lungs.

She has had dilations??? Hmmm. Didnt know they had bougies that small. Please

again if I can be of help let me know. You are looking for a pediatric achalasia

specialist. Carolyn mom of Cameron... Myo'd and fundo'd in 2005.

>

>

>>

>> 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]

Laying on your back in my case seems to make me choke on the food that is still

stuck in my throat. At this time it can go into my lungs. Somehow, sleeping on

an angle really helps w my spasms at night also.

I don't know why we spasm. But I know it is the most intense pain I've had-and

I've birthed 3 children. the only thing I've found, thanks to this group, is

drinking ice, ice cold water helps stop them.

I have started a gluten free/dairy free diet. That has helped a lot with mucus I

would choke on during this. I'm hoping it helps w swelling. Magnesium helps the

muscles relax

I'm sorry you are experiencing this. Wish there were more we could do to help.

Sent from my iPhone

On Sep 12, 2011, at 9:39 AM, Sima er <simafeiger@...> wrote:

> hey carolyn...

> I dont live in Boston, I live in NJ. I traveled to Boston for Dr. Nurko

to do a manometry, apparently there are very few dr.s in the US who do

manometry's on 5 yr olds! Is there actually such a thing as a Dr. who ONLY

specializes in achalasia? A pediatric one too? That would be amazing!!!

> Why can she not lay on her back? and how do I prevent that while she's

sleeping?

> What is myo and fundod?

> THANK YOU!!!!

>

> From: Hoffman <rp518dan@...>

> achalasia

> Sent: Monday, September 12, 2011 6:36 AM

> Subject: Re: Five Year Old Daughter With Achalasia

>

>

> One counterintuitive thing about food is that toast is better for us than

plain bread. Spaghetti can be rough, too. There is information on the site about

foods that give us trouble and that we have better luck with.

>

> Dan

>

> Sent from Smrtphone That Lacks Spellchecker

>

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

>

> >Hello! As a mom of a child with achalasia, I feel your pain, concern, fear.

In Boston is Dr. Lutecek (sp ) check in the data base, if he is not there get

hold of me and I will find him. Do not allow this child to lay on her back.

Please please get ahold of a specialist right away. I would be happy to talk to

you. Also go to reflux.org and read some of the stories there. Achalasia is not

known so much but your fear and angst is. These kids have had fundos too and

their moms are amazing. The worry is the possibility of aspiring food into the

lungs. She has had dilations??? Hmmm. Didnt know they had bougies that small.

Please again if I can be of help let me know. You are looking for a pediatric

achalasia specialist. Carolyn mom of Cameron... Myo'd and fundo'd in 2005.

> >

> >

> >>

> >> 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'm sorry to be driving you crazy with this subject yet again, but I must know

(especially if you are saying that spasms are worse than childbirth, and I am

due with my fourth child in 1 week!):

1. what are spasms

2. do all achalasians get them

3. how do I know if my daughter has one (remember, she is 5 yrs old, with

Down's Syndrome)

thank you so much.

From: Moms <rauchmom@...>

" achalasia " <achalasia >

Sent: Tuesday, September 13, 2011 1:04 AM

Subject: Re: Five Year Old Daughter With Achalasia

 

Laying on your back in my case seems to make me choke on the food that is still

stuck in my throat. At this time it can go into my lungs. Somehow, sleeping on

an angle really helps w my spasms at night also.

I don't know why we spasm. But I know it is the most intense pain I've had-and

I've birthed 3 children. the only thing I've found, thanks to this group, is

drinking ice, ice cold water helps stop them.

I have started a gluten free/dairy free diet. That has helped a lot with mucus I

would choke on during this. I'm hoping it helps w swelling. Magnesium helps the

muscles relax

I'm sorry you are experiencing this. Wish there were more we could do to help.

Sent from my iPhone

On Sep 12, 2011, at 9:39 AM, Sima er <simafeiger@...> wrote:

> hey carolyn...

> I dont live in Boston, I live in NJ. I traveled to Boston for Dr. Nurko

to do a manometry, apparently there are very few dr.s in the US who do

manometry's on 5 yr olds! Is there actually such a thing as a Dr. who ONLY

specializes in achalasia? A pediatric one too? That would be amazing!!!

> Why can she not lay on her back? and how do I prevent that while she's

sleeping?

> What is myo and fundod?

> THANK YOU!!!!

>

> From: Hoffman <rp518dan@...>

> achalasia

> Sent: Monday, September 12, 2011 6:36 AM

> Subject: Re: Five Year Old Daughter With Achalasia

>

>

> One counterintuitive thing about food is that toast is better for us than

plain bread. Spaghetti can be rough, too. There is information on the site about

foods that give us trouble and that we have better luck with.

>

> Dan

>

> Sent from Smrtphone That Lacks Spellchecker

>

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

>

> >Hello! As a mom of a child with achalasia, I feel your pain, concern, fear.

In Boston is Dr. Lutecek (sp ) check in the data base, if he is not there get

hold of me and I will find him. Do not allow this child to lay on her back.

Please please get ahold of a specialist right away. I would be happy to talk to

you. Also go to reflux.org and read some of the stories there. Achalasia is not

known so much but your fear and angst is. These kids have had fundos too and

their moms are amazing. The worry is the possibility of aspiring food into the

lungs. She has had dilations??? Hmmm. Didnt know they had bougies that small.

Please again if I can be of help let me know. You are looking for a pediatric

achalasia specialist. Carolyn mom of Cameron... Myo'd and fundo'd in 2005.

> >

> >

> >>

> >> 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 agree the lying at an angle helps.   However, there are versions of

Achalasia that cannot deal with eating anything Cold.  The cold would start the

intense spasm, chest pain for me until I had the myotomy.  After the myotomy, I

can eat cold but cannot eat bread.  There are so may different things that can

happen with this disease that sometimes it is hard to tell what is happening

especially when it is not you and it is your child.  My heart goes out to

your.  I was diagnoised when I was 22 and I am now 55.  It is a lifetime

disease, just because the surgery has been performed does not mean you are

cured of the disease, it just helps you to live with it. 

 

God Bless

 

Sharon Cline

>

> >Hello! As a mom of a child with achalasia, I feel your pain, concern, fear.

In Boston is Dr. Lutecek (sp ) check in the data base, if he is not there get

hold of me and I will find him. Do not allow this child to lay on her back.

Please please get ahold of a specialist right away. I would be happy to talk to

you. Also go to reflux.org and read some of the stories there. Achalasia is not

known so much but your fear and angst is. These kids have had fundos too and

their moms are amazing. The worry is the possibility of aspiring food into the

lungs. She has had dilations??? Hmmm. Didnt know they had bougies that small.

Please again if I can be of help let me know. You are looking for a pediatric

achalasia specialist. Carolyn mom of Cameron... Myo'd and fundo'd in 2005.

> >

> >

> >>

> >> 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]

Have you ever had a muscle cramp in your leg or your foot? It takes a

minute to go away, but it seems a lot longer because it is so painful...with

a spasm or NCCP (non-cardiac chest pain), your muscles in your esophagus

tighten up like a muscle cramp and it hurts so bad. I don't know if ALL

achalasia cases have muscle spasms. I have probably only had about 20

spasms in the 2 years that I have had achalasia, but they are

unforgettable. I discovered that if I am having a spasm, I can drink water

and they will stop....so always have water with you, even in the car. Also,

I discovered that spasms are brought on by stress. If I feel I am in a

stressful situation, I take a 100 mg of magnesium because it is a natural

muscle relaxant. Once you have one spasm, it feels like you could have

another one any minute...maybe because the esophageal muscle is sore from

the first spasm.

Does your daughter communicate pain? Maybe you can ask her to tell you

when things are bothering her! A spasm is painful while not being able to

swallow is frustrating and very uncomfortable...like having a big piece of

bread stuck in your throat for a long time.

My heart goes out to your daughter and you! I am so proud of you for

working so hard to figure this out for her!

Marci

On Wed, Sep 14, 2011 at 9:57 AM, Sima er <simafeiger@...> wrote:

> **

>

>

> I'm sorry to be driving you crazy with this subject yet again, but I must

> know (especially if you are saying that spasms are worse than childbirth,

> and I am due with my fourth child in 1 week!):

> 1. what are spasms

> 2. do all achalasians get them

> 3. how do I know if my daughter has one (remember, she is 5 yrs old, with

> Down's Syndrome)

> thank you so much.

>

> From: Moms <rauchmom@...>

> " achalasia " <achalasia >

> Sent: Tuesday, September 13, 2011 1:04 AM

> Subject: Re: Five Year Old Daughter With Achalasia

>

>

> Laying on your back in my case seems to make me choke on the food that is

> still stuck in my throat. At this time it can go into my lungs. Somehow,

> sleeping on an angle really helps w my spasms at night also.

>

> I don't know why we spasm. But I know it is the most intense pain I've

> had-and I've birthed 3 children. the only thing I've found, thanks to

> this group, is drinking ice, ice cold water helps stop them.

>

> I have started a gluten free/dairy free diet. That has helped a lot with

> mucus I would choke on during this. I'm hoping it helps w swelling.

> Magnesium helps the muscles relax

>

> I'm sorry you are experiencing this. Wish there were more we could do to

> help.

>

> Sent from my iPhone

>

> On Sep 12, 2011, at 9:39 AM, Sima er <simafeiger@...> wrote:

>

> > hey carolyn...

> > I dont live in Boston, I live in NJ. I traveled to Boston for Dr.

> Nurko to do a manometry, apparently there are very few dr.s in the US who do

> manometry's on 5 yr olds! Is there actually such a thing as a Dr. who ONLY

> specializes in achalasia? A pediatric one too? That would be amazing!!!

> > Why can she not lay on her back? and how do I prevent that while she's

> sleeping?

> > What is myo and fundod?

> > THANK YOU!!!!

> >

> > From: Hoffman <rp518dan@...>

> > achalasia

> > Sent: Monday, September 12, 2011 6:36 AM

> > Subject: Re: Five Year Old Daughter With Achalasia

> >

> >

> > One counterintuitive thing about food is that toast is better for us than

> plain bread. Spaghetti can be rough, too. There is information on the site

> about foods that give us trouble and that we have better luck with.

> >

> > Dan

> >

> > Sent from Smrtphone That Lacks Spellchecker

> >

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

> >

> > >Hello! As a mom of a child with achalasia, I feel your pain, concern,

> fear. In Boston is Dr. Lutecek (sp ) check in the data base, if he is not

> there get hold of me and I will find him. Do not allow this child to lay on

> her back. Please please get ahold of a specialist right away. I would be

> happy to talk to you. Also go to reflux.org and read some of the stories

> there. Achalasia is not known so much but your fear and angst is. These kids

> have had fundos too and their moms are amazing. The worry is the possibility

> of aspiring food into the lungs. She has had dilations??? Hmmm. Didnt know

> they had bougies that small. Please again if I can be of help let me know.

> You are looking for a pediatric achalasia specialist. Carolyn mom of

> Cameron... Myo'd and fundo'd in 2005.

> > >

> > >

> > >>

> > >> 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 am not a doctor and do not mean to indicate that I know everything.   I

teach high school Family and Consumer Science and I am looking at your questions

as if you were a student of mine asking those questions in my Nutrition Class.

  Forgive me if this is lengthy, I want to address the many questions you have

as much as I can.

 

From what you have said, she is having spasms.   From what I know about

Down’s Syndrome, there are 3 different types, so a lot may depend on her.  

You stated she is high functioning so that means she understands and can

communicate how she feels. 

It is important for her to let you know, because pain is not always the same in

each person or spasm. 

 

There seems to be different versions of Achalasia and sometimes what you read

here will seem like all of us have something different.  That is why it is so

hard to treat Achalasia.   Only our doctor can tell exactly what we have.  I

have the vigorous (spastic) version.   I feel that Achalasia is the most

misdiagnosed disease in the world and I think others would agree.

 

Sometimes we feel pain in our back or sides which feels like a pulling/pinching

sensation that if it is not stopped will turn into severe chest pain.  A

non-cardiac chest pain (spasm with pain) will start at the top of the soft part

of the tummy at the lower part of the breast bone and can radiate upwards until

it reaches the mouth, jaw bone and ears for me as well as a lot of other people,

or can just feel like heartburn.  Each person is different and that is why it

is important for her to be able to communicate what she is feeling. 

 

The spasms happen because food has not reached the stomach and the valve (lower

esophageal sphincter (LES)) between the esophagus and stomach has closed or

tightened down to the point where nothing can pass into the stomach.   That

will probably make her feel like she is going to be sick at her tummy and is the

reason she wants you to help her throw up.   She probably feels like there is

something in her throat and she cannot get it out.  

 

If she is eating and eating and eating, it would probably be a good idea to try

to get her to stop because the valve has probably closed and all the food is

staying in the esophagus.  The esophagus expands trying to hold the food she is

eating since the muscles (absence of esophageal peristalsis) cannot work

correctly to get the food into the stomach.  That is causing the pain she is

feeling and the sensation that she needs to throw up.   Food can remain in her

esophagus for hours whereas for you it empties rapidly.  Sometimes the

spasm/pain may not happen until hours later because she has been eating all

day.  Lying down flat is a huge no-no.  The lying down flat allows aspiration

of food into the lungs and can cause strangulation especially in one so young. 

She needs to have nothing for 3 hours before going to bed and sleep elevated. 

Place the head of her bed on 6 to 8 inch blocks and it is a gradual elevation

and should help her greatly. 

If she is sitting up coughing in her sleep, it is because she is clearing her

lungs of any debris that may be there from it not entering her tummy.  That is

what my mom told the doctors when they were trying to find what was wrong with

me.  My mom said it would sound like I had a backed up drain pipe and then I

would sit up and cough in my sleep and then I was fine.  I have been dealing

with this disease since diagnosed in 1978 at age 22; however I probably had it

for longer than that, as it took several years to be diagnosed correctly.  I

even had doctors tell me it was in my mind. 

 

From what I have read just to understand the disease she would probably do much

better if she had the Heller Myotomy (surgical procedure), I did; but I still

have the spasms but that is because of the vigorous nature of my version.   

 

Because the disease is rare there is not a great deal of research being done on

the disease, but as more and more becomes known about the disease it seems that

the younger a patient is when diagnosed the better they do with the surgery and

the older a person is the better they do with the dilations.

 

As far as what can she eat, that is going to be on a trial basis and as you can

see from what you have read on the responses of the group, everyone has

something to add or take away.  Again, this disease is different for each

person.  

 

That being said, the tough cuts of meat will be hard for her to eat (ground

beef, fish and any meat chopped up or ground up are easier), the acidic foods

and spicy foods will be trial and error.  For some people (myself included)

eating or drinking things that are cold only increased my spasms before my

myotomy and I could any kind of bread.  After surgery, the eating of bread is

out of the question for me and may be for her.  The gluten in the bread causes

it to stick together and ball up so it has a hard time getting into the

stomach.  Because she needs the B Vitamins that are in bread, any corn product

such as corn bread or popcorn or corn tortillas should be easier for her to eat

so that she can have some bread.  The B-Vitamins are also needed as they are

critical nutrients for all things mind-related: mood, memory, even migraines can

benefit from the B's. In the right amounts, the B's can quell anxiety, lift

depression, ease PMS, and boost your

energy.   There are also other foods that are good sources of Vitamin B. 

I hope that I have answered a few of your questions; I live in the Houston Texas

area so cannot recommend a doctor in your area.  I am sure there are other

people in the group in your area that can recommend a good doctor. 

It is not easy to figure out what is happening when it is not you.  I applaud

you for doing what you are doing.  Read all you can find: 

http://www.ssat.com/cgi-bin/achalasia.cgi  this is a good article as it is from

a physician guide for patients with Achalasia.

Good luck and keep us all posted and we do not mind the questions, we all had

them at one time.

Sharon Cline

From: Sima er <simafeiger@...>

Subject: Re: Five Year Old Daughter With Achalasia

" achalasia " <achalasia >

Date: Wednesday, September 14, 2011, 11:57 AM

 

I'm sorry to be driving you crazy with this subject yet again, but I must know

(especially if you are saying that spasms are worse than childbirth, and I am

due with my fourth child in 1 week!):

1. what are spasms

2. do all achalasians get them

3. how do I know if my daughter has one (remember, she is 5 yrs old, with

Down's Syndrome)

thank you so much.

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[Guest guest]

Hi Marci -

So sorry that your daughter is struggling with this -- she is lucky to have such

a perceptive mom to help her. And ask questions whenever you want -- this group

is here for that. I think I posted about 20 times in the weeks when I was

deciding what to do - -others helped me and now perhaps the rest of us

" newbie's " can help you.

For me there are two very different kinds of pain from Achalasia and based on

your description, it sounds like your daughter has the 2nd one.

Spasms: I have only had these a few times, after surgery. They were

incredibly painful, lasted 30 minutes or more, were slightly lessened by

drinking water and trying to relax, but were " stop what you are doing and try to

manage this pain " level of pain. It didn't seem to be triggered by eating --

could happen while I was not eating. The pain is sharp but radiates out up

arm, into neck or shoulder, jaw etc. Some people seem to get these a lot, and

sometimes called " vigorous Achalasia " .

Food Stuck: This happens from getting food stuck in esophagus, usually starts

while eating but can last quite awhile. It is a tight feeling in chest --

sometimes gets very tight and painful. Feels like it is right over the sternum

for me. Drinking water might make it feel better (if it pushes the food down)

or might make it worse (if food is just really stuck). I think the pain is from

the esophagus being stretched. In that case, regurgitation is the fastest way

to relieve the pain (so your daughter's request to help her gag & regurgitate

makes sense.) This used to happen all the time to me before surgery -- I would

dash up from table to run to bathroom to regurgitate (desired or not oftentimes)

to relieve pain, get food unstuck, and possibly start eating/drinking again

after. Post surgery, it has only happened a few times with gooey bread, talking

too much, eating too fast, not chewing enough, not drinking enough water between

bites. When the food finally passes, (or comes up) it feels immensely better.

This is a tight squeezing pain -- makes my eyes water sometimes it hurts that

much. And once there is a clog - nothing is going down, not even saliva. That

is when the foamy spit starts coming back up. The food is still stuck, and the

saliva glands and mucus glands are producing like crazy to get that food to go

down, but the clog prevents it from going down. Spitting up a bunch of foam &

undigested food is a classic symptom of achalasia.

In general, stretching out your esophagus with stuck food is not good -- that

can create permanent damage. And a hugely overextended esophagus leads to

additional problems & complications, that won't be resolved even if the

sphincter does relax & open again. So -- avoiding the food stuck problem,

stopping eating when that stuck food pain occurs is wise. I can't recommend or

prohibit regurgitation, definitely a question for an Achalasia savvy

Gastroenterologist. I will say that I did achieve relief from food/eating

mistakes by regurgitating frequently prior to my surgery. And often returned to

my meal afterwards, albeit cautiously, to eat quite happily again. Smoothies,

mashed potatoes, soup in a blender -- all these things went down more easily.

If she is really struggling with stuck food, you want to move toward a more

liquid & water soluable diet. Some of us (myself included) got to the point

that we could only drink clear liquids, and eventually can't swallow anything

(not even water or own saliva). If her pain goes away from regurgitation,

then it is a stuck food issue -- separate from a spasm. I can't say whether

stuck food induces a spasm since I didn't have that experience, but perhaps

others can clarify their own distinctions.

Hope that helps you discuss this with your daughter.

(Diagnosed 6/2011, Myotomy 7/5/2011)

>>

>>

>> I'm sorry to be driving you crazy with this subject yet again, but I must

>> know (especially if you are saying that spasms are worse than childbirth,

>> and I am due with my fourth child in 1 week!):

>> 1. what are spasms

>> 2. do all achalasians get them

>> 3. how do I know if my daughter has one (remember, she is 5 yrs old, with

>> Down's Syndrome)

>> thank you so much.

[Guest guest]

thank you sharon...

wow that was a lot of info! I will have to read it a bunch of times until I

" digest " it all...

Thank you for taking time out to explain spasms to me, as she cannot.

She always wants to lay on the floor when drooling, etc... she does not want to

sit upright. is that very bad?

From: Sharon Cline <sharon_cline@...>

achalasia

Sent: Wednesday, September 14, 2011 3:06 PM

Subject: Re: Five Year Old Daughter With Achalasia

 

I am not a doctor and do not mean to indicate that I know everything.   I

teach high school Family and Consumer Science and I am looking at your questions

as if you were a student of mine asking those questions in my Nutrition Class.

  Forgive me if this is lengthy, I want to address the many questions you have

as much as I can.

 

From what you have said, she is having spasms.   From what I know about

Down’s Syndrome, there are 3 different types, so a lot may depend on her.  

You stated she is high functioning so that means she understands and can

communicate how she feels. 

It is important for her to let you know, because pain is not always the same in

each person or spasm. 

 

There seems to be different versions of Achalasia and sometimes what you read

here will seem like all of us have something different.  That is why it is so

hard to treat Achalasia.   Only our doctor can tell exactly what we have.  I

have the vigorous (spastic) version.   I feel that Achalasia is the most

misdiagnosed disease in the world and I think others would agree.

 

Sometimes we feel pain in our back or sides which feels like a pulling/pinching

sensation that if it is not stopped will turn into severe chest pain.  A

non-cardiac chest pain (spasm with pain) will start at the top of the soft part

of the tummy at the lower part of the breast bone and can radiate upwards until

it reaches the mouth, jaw bone and ears for me as well as a lot of other people,

or can just feel like heartburn.  Each person is different and that is why it

is important for her to be able to communicate what she is feeling. 

 

The spasms happen because food has not reached the stomach and the valve (lower

esophageal sphincter (LES)) between the esophagus and stomach has closed or

tightened down to the point where nothing can pass into the stomach.   That

will probably make her feel like she is going to be sick at her tummy and is the

reason she wants you to help her throw up.   She probably feels like there is

something in her throat and she cannot get it out.  

 

If she is eating and eating and eating, it would probably be a good idea to try

to get her to stop because the valve has probably closed and all the food is

staying in the esophagus.  The esophagus expands trying to hold the food she is

eating since the muscles (absence of esophageal peristalsis) cannot work

correctly to get the food into the stomach.  That is causing the pain she is

feeling and the sensation that she needs to throw up.   Food can remain in her

esophagus for hours whereas for you it empties rapidly.  Sometimes the

spasm/pain may not happen until hours later because she has been eating all

day.  Lying down flat is a huge no-no.  The lying down flat allows aspiration

of food into the lungs and can cause strangulation especially in one so young. 

She needs to have nothing for 3 hours before going to bed and sleep elevated. 

Place the head of her bed on 6 to 8 inch blocks and it is a gradual elevation

and should help her greatly. 

If she is sitting up coughing in her sleep, it is because she is clearing her

lungs of any debris that may be there from it not entering her tummy.  That is

what my mom told the doctors when they were trying to find what was wrong with

me.  My mom said it would sound like I had a backed up drain pipe and then I

would sit up and cough in my sleep and then I was fine.  I have been dealing

with this disease since diagnosed in 1978 at age 22; however I probably had it

for longer than that, as it took several years to be diagnosed correctly.  I

even had doctors tell me it was in my mind. 

 

From what I have read just to understand the disease she would probably do much

better if she had the Heller Myotomy (surgical procedure), I did; but I still

have the spasms but that is because of the vigorous nature of my version.   

 

Because the disease is rare there is not a great deal of research being done on

the disease, but as more and more becomes known about the disease it seems that

the younger a patient is when diagnosed the better they do with the surgery and

the older a person is the better they do with the dilations.

 

As far as what can she eat, that is going to be on a trial basis and as you can

see from what you have read on the responses of the group, everyone has

something to add or take away.  Again, this disease is different for each

person.  

 

That being said, the tough cuts of meat will be hard for her to eat (ground

beef, fish and any meat chopped up or ground up are easier), the acidic foods

and spicy foods will be trial and error.  For some people (myself included)

eating or drinking things that are cold only increased my spasms before my

myotomy and I could any kind of bread.  After surgery, the eating of bread is

out of the question for me and may be for her.  The gluten in the bread causes

it to stick together and ball up so it has a hard time getting into the

stomach.  Because she needs the B Vitamins that are in bread, any corn product

such as corn bread or popcorn or corn tortillas should be easier for her to eat

so that she can have some bread.  The B-Vitamins are also needed as they are

critical nutrients for all things mind-related: mood, memory, even migraines can

benefit from the B's. In the right amounts, the B's can quell anxiety, lift

depression, ease PMS, and boost your

energy.   There are also other foods that are good sources of Vitamin B. 

I hope that I have answered a few of your questions; I live in the Houston Texas

area so cannot recommend a doctor in your area.  I am sure there are other

people in the group in your area that can recommend a good doctor. 

It is not easy to figure out what is happening when it is not you.  I applaud

you for doing what you are doing.  Read all you can find: 

http://www.ssat.com/cgi-bin/achalasia.cgi  this is a good article as it is from

a physician guide for patients with Achalasia.

Good luck and keep us all posted and we do not mind the questions, we all had

them at one time.

Sharon Cline

From: Sima er <simafeiger@...>

Subject: Re: Five Year Old Daughter With Achalasia

" achalasia " <achalasia >

Date: Wednesday, September 14, 2011, 11:57 AM

 

I'm sorry to be driving you crazy with this subject yet again, but I must know

(especially if you are saying that spasms are worse than childbirth, and I am

due with my fourth child in 1 week!):

1. what are spasms

2. do all achalasians get them

3. how do I know if my daughter has one (remember, she is 5 yrs old, with

Down's Syndrome)

thank you so much.

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brings together members from over 1200 disease specific support groups for

sharing of information and support.

MARKETPLACE

Stay on top of your group activity without leaving the page you're on - Get the

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..

[Guest guest]

- thank you so much for patiently explaining everything to me!

from what you are saying, I think/hope she does not have these spasms...

From: Cipresse <steph@...>

achalasia

Sent: Wednesday, September 14, 2011 4:00 PM

Subject: Re: Five Year Old Daughter With Achalasia

 

Hi Marci -

So sorry that your daughter is struggling with this -- she is lucky to have such

a perceptive mom to help her. And ask questions whenever you want -- this group

is here for that. I think I posted about 20 times in the weeks when I was

deciding what to do - -others helped me and now perhaps the rest of us

" newbie's " can help you.

For me there are two very different kinds of pain from Achalasia and based on

your description, it sounds like your daughter has the 2nd one.

Spasms: I have only had these a few times, after surgery. They were incredibly

painful, lasted 30 minutes or more, were slightly lessened by drinking water and

trying to relax, but were " stop what you are doing and try to manage this pain "

level of pain. It didn't seem to be triggered by eating -- could happen while I

was not eating. The pain is sharp but radiates out up arm, into neck or

shoulder, jaw etc. Some people seem to get these a lot, and sometimes called

" vigorous Achalasia " .

Food Stuck: This happens from getting food stuck in esophagus, usually starts

while eating but can last quite awhile. It is a tight feeling in chest --

sometimes gets very tight and painful. Feels like it is right over the sternum

for me. Drinking water might make it feel better (if it pushes the food down) or

might make it worse (if food is just really stuck). I think the pain is from the

esophagus being stretched. In that case, regurgitation is the fastest way to

relieve the pain (so your daughter's request to help her gag & regurgitate makes

sense.) This used to happen all the time to me before surgery -- I would dash up

from table to run to bathroom to regurgitate (desired or not oftentimes) to

relieve pain, get food unstuck, and possibly start eating/drinking again after.

Post surgery, it has only happened a few times with gooey bread, talking too

much, eating too fast, not chewing enough, not drinking enough water between

bites. When the food

finally passes, (or comes up) it feels immensely better. This is a tight

squeezing pain -- makes my eyes water sometimes it hurts that much. And once

there is a clog - nothing is going down, not even saliva. That is when the foamy

spit starts coming back up. The food is still stuck, and the saliva glands and

mucus glands are producing like crazy to get that food to go down, but the clog

prevents it from going down. Spitting up a bunch of foam & undigested food is a

classic symptom of achalasia.

In general, stretching out your esophagus with stuck food is not good -- that

can create permanent damage. And a hugely overextended esophagus leads to

additional problems & complications, that won't be resolved even if the

sphincter does relax & open again. So -- avoiding the food stuck problem,

stopping eating when that stuck food pain occurs is wise. I can't recommend or

prohibit regurgitation, definitely a question for an Achalasia savvy

Gastroenterologist. I will say that I did achieve relief from food/eating

mistakes by regurgitating frequently prior to my surgery. And often returned to

my meal afterwards, albeit cautiously, to eat quite happily again. Smoothies,

mashed potatoes, soup in a blender -- all these things went down more easily. If

she is really struggling with stuck food, you want to move toward a more liquid

& water soluable diet. Some of us (myself included) got to the point that we

could only drink clear liquids, and eventually can't

swallow anything (not even water or own saliva). If her pain goes away from

regurgitation, then it is a stuck food issue -- separate from a spasm. I can't

say whether stuck food induces a spasm since I didn't have that experience, but

perhaps others can clarify their own distinctions.

Hope that helps you discuss this with your daughter.

(Diagnosed 6/2011, Myotomy 7/5/2011)

>>

>>

>> I'm sorry to be driving you crazy with this subject yet again, but I must

>> know (especially if you are saying that spasms are worse than childbirth,

>> and I am due with my fourth child in 1 week!):

>> 1. what are spasms

>> 2. do all achalasians get them

>> 3. how do I know if my daughter has one (remember, she is 5 yrs old, with

>> Down's Syndrome)

>> thank you so much.

[Guest guest]

honestly, I really do not think she is getting these spasms. or at least I truly

hope not.

She gets very miserable after a meal when something is stuck, and is drooling

and sad and quiet, but not like screaming in pain...

I guess I wont know till she's much older and can describe her pains.

From: Marcene Rainey <marcenerainey@...>

achalasia

Sent: Wednesday, September 14, 2011 2:14 PM

Subject: Re: Five Year Old Daughter With Achalasia

Have you ever had a muscle cramp in your leg or your foot?  It takes a

minute to go away, but it seems a lot longer because it is so painful...with

a spasm or NCCP (non-cardiac chest pain), your muscles in your esophagus

tighten up like a muscle cramp and it hurts so bad.  I don't know if ALL

achalasia cases have muscle spasms.  I have probably only had about 20

spasms in the 2 years that I have had achalasia, but they are

unforgettable.  I discovered that if I am having a spasm, I can drink water

and they will stop....so always have water with you, even in the car.  Also,

I discovered that spasms are brought on by stress.  If I feel I am in a

stressful situation, I take a 100 mg of magnesium because it is a natural

muscle relaxant.  Once you have one spasm, it feels like you could have

another one any minute...maybe because the esophageal muscle is sore from

the first spasm.

Does your daughter communicate pain?  Maybe you can ask her to tell you

when things are bothering her!  A spasm is painful while not being able to

swallow is frustrating and very uncomfortable...like having a big piece of

bread stuck in your throat for a long time.

My heart goes out to your daughter and you!  I am so proud of you for

working so hard to figure this out for her!

Marci

On Wed, Sep 14, 2011 at 9:57 AM, Sima er <simafeiger@...> wrote:

> **

>

>

> I'm sorry to be driving you crazy with this subject yet again, but I must

> know (especially if you are saying that spasms are worse than childbirth,

> and I am due with my fourth child in 1 week!):

> 1. what are spasms

> 2. do all achalasians get them

> 3. how do I know if my daughter has one (remember, she is 5 yrs old, with

> Down's Syndrome)

> thank you so much.

>

> From: Moms <rauchmom@...>

> " achalasia " <achalasia >

> Sent: Tuesday, September 13, 2011 1:04 AM

> Subject: Re: Five Year Old Daughter With Achalasia

>

>

> Laying on your back in my case seems to make me choke on the food that is

> still stuck in my throat. At this time it can go into my lungs. Somehow,

> sleeping on an angle really helps w my spasms at night also.

>

> I don't know why we spasm. But I know it is the most intense pain I've

> had-and I've birthed 3 children. the only thing I've found, thanks to

> this group, is drinking ice, ice cold water helps stop them.

>

> I have started a gluten free/dairy free diet. That has helped a lot with

> mucus I would choke on during this. I'm hoping it helps w swelling.

> Magnesium helps the muscles relax

>

> I'm sorry you are experiencing this. Wish there were more we could do to

> help.

>

> Sent from my iPhone

>

> On Sep 12, 2011, at 9:39 AM, Sima er <simafeiger@...> wrote:

>

> > hey carolyn...

> > I dont live in Boston, I live in NJ. I traveled to Boston for Dr.

> Nurko to do a manometry, apparently there are very few dr.s in the US who do

> manometry's on 5 yr olds! Is there actually such a thing as a Dr. who ONLY

> specializes in achalasia? A pediatric one too? That would be amazing!!!

> > Why can she not lay on her back? and how do I prevent that while she's

> sleeping?

> > What is myo and fundod?

> > THANK YOU!!!!

> >

> > From: Hoffman <rp518dan@...>

> > achalasia

> > Sent: Monday, September 12, 2011 6:36 AM

> > Subject: Re: Five Year Old Daughter With Achalasia

> >

> >

> > One counterintuitive thing about food is that toast is better for us than

> plain bread. Spaghetti can be rough, too. There is information on the site

> about foods that give us trouble and that we have better luck with.

> >

> > Dan

> >

> > Sent from Smrtphone That Lacks Spellchecker

> >

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

> >

> > >Hello! As a mom of a child with achalasia, I feel your pain, concern,

> fear. In Boston is Dr. Lutecek (sp ) check in the data base, if he is not

> there get hold of me and I will find him. Do not allow this child to lay on

> her back. Please please get ahold of a specialist right away. I would be

> happy to talk to you. Also go to reflux.org and read some of the stories

> there. Achalasia is not known so much but your fear and angst is. These kids

> have had fundos too and their moms are amazing. The worry is the possibility

> of aspiring food into the lungs. She has had dilations??? Hmmm. Didnt know

> they had bougies that small. Please again if I can be of help let me know.

> You are looking for a pediatric achalasia specialist. Carolyn mom of

> Cameron... Myo'd and fundo'd in 2005.

> > >

> > >

> > >>

> > >> 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'm sorry for the difficulty your daughter is facing. Not all spasms are

dreadfully painful. Many of us have pretty regular spasms, but they are more of

a strong discomfort. Maybe try to get a color line or something so she can

indicate how strong it is. Of course she hasn't had childbirth yet so has no

comparison, but if she can indicate how bad it is compared to others maybe that

would help you.

For me eating bread or something like crackers, that would fill the esophagus

and let it sit there will stop the spasm. But then you have to deal with how to

get it out.

Some here have luck with popsicles helping stop spasms.

Some of us can regurgitate very easily, almost like a burp. I could usually

take things right back out of my esophagus. Sometimes they stuck. I felt

compelled to take things out if they wouldn't go down so my esophagus wouldn't

stretch out. Others here try to keep the food in.

There are some members here that have had achalasia as a child, they are very

helpful.

I too would join those suggesting that you look for doctors that are not

suggesting botox right away. There are so many here that messed around with

treatments other than surgery, and then regret it later. At all costs you want

to try to keep the esophagus from stretching. In my opinion that is probably

surgery for most people. If you do botox or dialations, then you wait until the

symptoms are bad again before you do the next thing, which to me usually means

the esophagus has food jammed in it again, stretching it, like old pantyhose.

But that is just my visualization. For some botox is a good suggestion.

Try to meet some of us in person. It is very difficult to understand why some

foods go down and some don't. High fat things work for us, but our friends and

family may keep suggesting pureeing everything. That isn't so much the issue.

We all are different, but many of us can eat a hamburger sometimes, but not pea

soup.

Sandy

> > >>

> > >> 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!

> > >>

> > >

> > >

> >

> >