Re: My Delicious Five Year Old Daughter With Achalasia

[Guest guest]

What your daughter is experiencing when she is foaming is an inability to

swallow and an over-production of salaiva. there is a pressure on the chest, and

a growing spreading pain, that is eliviated when the undigested food is

regurgitated. The issue isn't nausea. it is pain. 

solid foods like hot dogs, steak, anything with alot of density is not going to

work. stick with soft foods, casseroles. 

I am so sorry your sweet child is going through this. my daughter was diagnosed

at 11 and is due for her second heller myotomy next week in tampa. i can't

imagine what I would do if her communication skills were hampered. perhaps she

can show you how she feels on a doll. 

[Guest guest]

One thing you could do is keep her elevated so there is not so much back up.  Do

not let her eat spicy or pepper foods it can aggravate the condition.  At a

young age, surgery could be the answer.  I am in Texas so I do not know of

doctors where you are located.

 

Sharon Cline 

---

[Guest guest]

It is so sad to hear that any young child could possibly have this horrible

disease!  You sound like you are both in good spirits!  With my own

experience, the drooling comes due to the food being stuck and that at times, it

just doesn't want to come back up, and that's what causes my drooling.  At

those times, it is easier to gag so that the food gets out quicker.  It can be

uncomfortable when the food is stuck, and the longer it stays stuck the more

drool, or spit in my case.  There were many times that nothing would go down,

not even spit, and there were some days where I could eat anything.  Achalasia

has a mind of it's own.  The spasms feel like a heart attack, they can

sometimes be very painful.  Sometimes, the pain radiates in my jaws, ears and

back, sometimes if I swallow something cold, or something warm, not hot, they go

away quickly.  Other times, I have to walk and breathe and concentrate on

something else, like walking & reading at

the same time.  Anything to get my mind off of it.  I just recently had

surgery to 'fix' it, and so far, it has does wonders!!  Still have some spasms,

but it's wonderful to swallow again and not wake up choking every night while

sleeping!  I wish I could help you more, as I can't imagine having Achalasia so

young!  God Bless!

Jen

________________________________

From: newjerseyhazelnut <simafeiger@...>

achalasia

Sent: Sunday, September 11, 2011 9:57 PM

Subject: My Delicious Five Year Old Daughter With Achalasia

 

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]

thanks so much for replying! I still do not know what spasms are, and whether or

not my daughter has them. could you tell me more about that please?

From: Crouch <jencrouch@...>

" achalasia " <achalasia >

Sent: Monday, September 12, 2011 7:53 AM

Subject: Re: My Delicious Five Year Old Daughter With Achalasia

 

It is so sad to hear that any young child could possibly have this horrible

disease!  You sound like you are both in good spirits!  With my own

experience, the drooling comes due to the food being stuck and that at times, it

just doesn't want to come back up, and that's what causes my drooling.  At

those times, it is easier to gag so that the food gets out quicker.  It can be

uncomfortable when the food is stuck, and the longer it stays stuck the more

drool, or spit in my case.  There were many times that nothing would go down,

not even spit, and there were some days where I could eat anything.  Achalasia

has a mind of it's own.  The spasms feel like a heart attack, they can

sometimes be very painful.  Sometimes, the pain radiates in my jaws, ears and

back, sometimes if I swallow something cold, or something warm, not hot, they go

away quickly.  Other times, I have to walk and breathe and concentrate on

something else, like walking & reading at

the same time.  Anything to get my mind off of it.  I just recently had

surgery to 'fix' it, and so far, it has does wonders!!  Still have some spasms,

but it's wonderful to swallow again and not wake up choking every night while

sleeping!  I wish I could help you more, as I can't imagine having Achalasia so

young!  God Bless!

Jen

________________________________

From: newjerseyhazelnut <simafeiger@...>

achalasia

Sent: Sunday, September 11, 2011 9:57 PM

Subject: My Delicious Five Year Old Daughter With Achalasia

 

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 view spasms as 'pain attacks', because they are painful and you just never

know when they will happen.  I believe that they are like a leg cramp, except

it's in your esophagus instead.  I need to get more pottasium in my system, so

then maybe this will help with her too?  Not sure, but the last time I had

blood work, they told me I was low on pottasium.

Jen

________________________________

From: Sima er <simafeiger@...>

" achalasia " <achalasia >

Sent: Monday, September 12, 2011 8:34 AM

Subject: Re: My Delicious Five Year Old Daughter With Achalasia

 

thanks so much for replying! I still do not know what spasms are, and whether or

not my daughter has them. could you tell me more about that please?

From: Crouch <jencrouch@...>

" achalasia " <achalasia >

Sent: Monday, September 12, 2011 7:53 AM

Subject: Re: My Delicious Five Year Old Daughter With Achalasia

 

It is so sad to hear that any young child could possibly have this horrible

disease!  You sound like you are both in good spirits!  With my own

experience, the drooling comes due to the food being stuck and that at times, it

just doesn't want to come back up, and that's what causes my drooling.  At

those times, it is easier to gag so that the food gets out quicker.  It can be

uncomfortable when the food is stuck, and the longer it stays stuck the more

drool, or spit in my case.  There were many times that nothing would go down,

not even spit, and there were some days where I could eat anything.  Achalasia

has a mind of it's own.  The spasms feel like a heart attack, they can

sometimes be very painful.  Sometimes, the pain radiates in my jaws, ears and

back, sometimes if I swallow something cold, or something warm, not hot, they go

away quickly.  Other times, I have to walk and breathe and concentrate on

something else, like walking & reading at

the same time.  Anything to get my mind off of it.  I just recently had

surgery to 'fix' it, and so far, it has does wonders!!  Still have some spasms,

but it's wonderful to swallow again and not wake up choking every night while

sleeping!  I wish I could help you more, as I can't imagine having Achalasia so

young!  God Bless!

Jen

________________________________

From: newjerseyhazelnut <simafeiger@...>

achalasia

Sent: Sunday, September 11, 2011 9:57 PM

Subject: My Delicious Five Year Old Daughter With Achalasia

 

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!