Success

[Guest guest]

Congratulations!! I can remember last spring/summer when Mac first drank

from a straw--it was sooo exciting!! We'd gone shopping and I forgot his

sippy cup. We stopped at a snack bar in Meijer to get a drink---I tried

several attempts to get himbto try it from a straw and BINGO--he did it!! I

was all by myself in the Meijer store and so excited--I told a lady sitting

at the next table, " This is the first time he's drank from a straw!! " --I

think I was probably bubbling over with a little bit too much enthusiasm, as

she smiled and nodded, but I'm sure she thought I was nuts!!!

Yea, !!

Jill

Mac's mom

OH

success

> Hi!

> Big excitement! My drank from a straw today!!!!! Biggest oral

motor accomplishment we have had in a long time. He really got excited

about it too since his entire preschool class, teachers and therapist really

made a big deal out of it. The day I can finally throw out those bottles

will be a great day indeed!

> Jodi, mom to 3.8 DS and Spencer 21 mo NDA

>

>

>

>

[Guest guest]

My sister in law has the same condition. Her figners crack so badly they

bleed. Would you mind sharing your recipie for the ointment? She has tried

all kinds of prescription creams, but nothing seems to help much. Thanks

and Happy New Year!

Lynn in Edmonton

success

> I made Herbal Heaing Ointment and Arnica Montana Balm as part of my

toiletry

> xmas baskets this year. My sister has a condition that causes her hands

to

> itch, flake and crack - she used the ointment (which we have lovingly

named

> " Shrek Earwax Ointment " ) and it has helped to clear them up immensely - so

> much that now she is going to use the salt scrub I gave her -

>

> " Being challenged in life is inevitable, being defeated is optional. " --

> Crawford

>

> A. Pasch (mpasch@...)

>

>

>

>

[Guest guest]

, I am interested in your ointment and balm, too! My hands crack, split,

shed like a snake skin, particularly in the winter!

Thanks, Leanna in Alberta.

[Guest guest]

Lynn, I am just outside of Calgary. Where do you buy your supplies from? Do

you shop over the 'net? I am currently shopping out of Vancouver, but would

love to find some place closer, if at all possible.

Thanks very much, Leanna in Alberta.

[Guest guest]

Hi and all,

I am Roxana, new to this list. Am loving it.

I too made some " Healing Herbal Salve " for

holiday gifts. I changed my formula from last

year and found this years to be much more

emollient.

What is your basic recipe?

Mine is:

High quality Beeswax

Olive Oil

Almond Oil

Apricot Kernal

Aloe Vera Oil

Calenda infused Oil

and a synergy of Essential Oils.

R

>I made Herbal Heaing Ointment and Arnica Montana Balm as part of my toiletry

>xmas baskets this year. My sister has a condition that causes her hands to

>itch, flake and crack - she used the ointment (which we have lovingly named

> " Shrek Earwax Ointment " ) and it has helped to clear them up immensely - so

>much that now she is going to use the salt scrub I gave her -

>

> " Being challenged in life is inevitable, being defeated is optional. " --

> Crawford

>

> A. Pasch (mpasch@...)

--

Roxana Villa

Visual Alchemy

http://www.roxanavilla.com

Tel: 818 992 0490

Fax 818 992 0492

***

The healing art of Roxana Villa is a symphony

of luminous color woven with metaphor, allegory

and symbols from the ancient mysteries.

[Guest guest]

Great to hear this, Eleny.

I didn't do so good during this H.B. challenge...

my cravings got the better of me !!!!

As a matter of fact, I haven't thought about Veal for a long, long

time and might try it soon.

Thanks, Gaye

[Guest guest]

In a message dated 3/21/2004 2:46:41 PM Eastern Standard Time, pfaigen2@... writes:

Back to the GI who told me that I probably had a failed myotomy but that he would try a dilation. So 1/26 I had it and presto I am like new again. I went for a follow up this past Thursday after he made me go for a manometry(I fought not to have it but lost) and another swallow study he says that I am now his Poster Child. I am doing very well and don't have to return unless I get into trouble.

Just a little question; Does a "failed myotomy" mean that the surgeon didn't do it right, or that even the best myotomy in the world from the best surgeon would'nt have helped you, or just what does that mean? In the case of a "failed myotomy" what else can be done, surgically,to make it successful? Or does one failed myotomy mean there is nothing else that can be done to help the condition?

Sorry about all the questions, but enquiring minds want to know!

Thanks,

Jan in Northern Kentucky

[Guest guest]

Hi Patty,

I am so glad you are doing well!!!!!!!!!yeah!!!!

Genia :0)

> I had surgery in Aug. 03. By Nov. some of the old problems were

> beginning. After going back to the surgeon and a swallow study I

was

> told I needed a dilation. Back to the GI who told me that I

probably

> had a failed myotomy but that he would try a dilation. So 1/26 I

had

> it and presto I am like new again. I went for a follow up this past

> Thursday after he made me go for a manometry(I fought not to have

it

> but lost) and another swallow study he says that I am now his

Poster

> Child. I am doing very well and don't have to return unless I get

> into trouble.

> I can eat anything slowly. Life is good. I wanted others not to

give

> up hope.

> I did ask my GI if I was his only A. He said no that he has about

30

> of us. However, I get the prize. Needless to say I am relieved as

he

> was thinking that I would need more surgery.

> To those facing an upcoming surgery,we will be thinking of you with

> lots of prayers. Thanks to for being there for me.

>

> Patty in Houston

[Guest guest]

Hi Patty,

Thanks for the update. It's great to hear that you're doing so well.

Is this the same surgeon who did your first surgery?

The same surgeon who did your dilation in January? If you are his " Poster

Child " and he has 29 other Achalasian's as patients, how many successful

myotomies has he performed? I know I sure would insist on knowing. I've

had seven dilations in the past 12 years as well as 2 failed myotomies.

When I do get to the point where I can't function day to day, I'll be

speaking with Debbi about hotel prices and heading to the States. I'm sorry

if this sounds abrupt, but I've never heard of having to go for another

manometry after a dilation. Are you totally confident in this surgeon's

abilities?

I am glad you are better, I'm just concerned.

.

SUCCESS

> I had surgery in Aug. 03. By Nov. some of the old problems were

> beginning. After going back to the surgeon and a swallow study I was

> told I needed a dilation. Back to the GI who told me that I probably

> had a failed myotomy but that he would try a dilation. So 1/26 I had

> it and presto I am like new again. I went for a follow up this past

> Thursday after he made me go for a manometry(I fought not to have it

> but lost) and another swallow study he says that I am now his Poster

> Child. I am doing very well and don't have to return unless I get

> into trouble.

> I can eat anything slowly. Life is good. I wanted others not to give

> up hope.

> I did ask my GI if I was his only A. He said no that he has about 30

> of us. However, I get the prize. Needless to say I am relieved as he

> was thinking that I would need more surgery.

> To those facing an upcoming surgery,we will be thinking of you with

> lots of prayers. Thanks to for being there for me.

>

> Patty in Houston

>

>

>

>

>

>

[Guest guest]

wrote:

When I do get to the point where I can't function day to day, I'll bespeaking with Debbi about hotel prices and heading to the States.

We oughta try to get a Group Discount at The Cleveland Clinic.... me, Maggie, .... who else wants to join us?

)Deb

[Guest guest]

I had a failed myotomy My Doctor said he didn't cut down far enough He should have down into the stomach more He wanted to do it over for nothing No I didn't do it Just managing the best I can

--- Bartolino

--- jfbartolino@...

--- EarthLink: The #1 provider of the Real Internet.

Re: SUCCESS

In a message dated 3/21/2004 2:46:41 PM Eastern Standard Time, pfaigen2@... writes:

Back to the GI who told me that I probably had a failed myotomy but that he would try a dilation. So 1/26 I had it and presto I am like new again. I went for a follow up this past Thursday after he made me go for a manometry(I fought not to have it but lost) and another swallow study he says that I am now his Poster Child. I am doing very well and don't have to return unless I get into trouble.

Just a little question; Does a "failed myotomy" mean that the surgeon didn't do it right, or that even the best myotomy in the world from the best surgeon would'nt have helped you, or just what does that mean? In the case of a "failed myotomy" what else can be done, surgically,to make it successful? Or does one failed myotomy mean there is nothing else that can be done to help the condition?

Sorry about all the questions, but enquiring minds want to know!

Thanks,

Jan in Northern Kentucky

[Guest guest]

You can count me in! If ever decides

to come to the states and go to CC and you guys were to have back to back myotomies, I wouldn’t want to miss that for the

world! I’d be on the first flight out so I could be there to take care of

you guys when you wake up! :-)

Sandi

Re: SUCCESS

wrote:

When I do get to the point where I can't function day

to day, I'll be

speaking with Debbi about hotel prices and heading

to the States.

We

oughta try to get a Group Discount at The Cleveland Clinic.... me, Maggie,

.... who else wants to join us?

)

Deb

[Guest guest]

Thanks so much Sandi! That was so sweet :-)

I got inventive tonight. I cooked some garlic shrimp, chopped it to bits with my hand held chopper. I melted mozzarella cheese on the top. Delicious! As long as I only eat enough to fill my esophagus and let gravitational pull work its magic, I do O.K. I can eat soup and a variety of soft foods. Eating was never a huge priority, so I am able to manage. I have my few days a month of "nothing by mouth", but usually it's after lifting too much or stress.

My totally "off the wall" 12 year old is finally being diagnosed via tele-conference this Thursday from Toronto. It's totally bizarre, but I know caffeine in coffee and pop settles him to the point we can hold a conversation. I did some reading, and it makes sense in regard to ADHD. Cliff has two cups of coffee before School to relax. If he survives a whole day in School, he gets a pop and as long as he wants on the X-box. It sounds crazy, but I'm working together with a psychologist, child care worker, family support councillor. We're doing whatever helps him cope. The ODD is getting bearable, but by 11:00 P.M. I'm so glad another day is over! The Children's Aid Society is providing as many resources as they are able, but I must say, Cliff is the most challenging child out of 37. I'll be glad when the day treatment program begins.

It's finally above freezing here. Cliff has decided to jog with me each day now that it's warmed up a bit. (I bought him a Discman for jogging) Maybe that will help him relax and actually sleep at night. I think it's time for me to join an ODD/ADHD support group :-)

I need sleep!!!

.

RE: SUCCESS

You can count me in! If ever decides to come to the states and go to CC and you guys were to have back to back myotomies, I wouldn’t want to miss that for the world! I’d be on the first flight out so I could be there to take care of you guys when you wake up! :-)

Sandi

-----Original Message-----From: Debbi Heiser [mailto:heiser@...] Sent: Monday, March 22, 2004 7:43 AMachalasia Subject: Re: SUCCESS

wrote:

When I do get to the point where I can't function day to day, I'll bespeaking with Debbi about hotel prices and heading to the States.

We oughta try to get a Group Discount at The Cleveland Clinic.... me, Maggie, .... who else wants to join us?

)Deb

[Guest guest]

,

I find the “caffeine as a relaxant”

to be very interesting. I’d like to hear more if you get a chance. I used

to not be able to tolerate coffee at all. A quarter of a cup and my nerves

would be all in a frazzle, but then my doctor put me on serotonin (Celexa) and

one of the weirdest effect of the Celexa that I notice is that I can drink as

much coffee as I wish, and the caffeine only effects me now by making me sleepy.

Pretty strange, huh!

Does Cliff take Celexa by any chance???

Cliff is very lucky to have you. It takes

a great deal of strength and discipline on your part to cope with a challenging

child day in and day out, but if anyone can help him, it sounds like it will be

you!

The garlic shrimp sounded good! Doesn’t

water work at all to help push it down??? I can’t stand the feeling of food stuck

in my E, so it’s always been either up or down with it for me.

Have a good night…and good luck on

Thursday with the tele-conference.

Sandi

Re: SUCCESS

Thanks

so much Sandi! That was so sweet :-)

I got inventive tonight. I cooked some garlic shrimp, chopped it to

bits with my hand held chopper. I melted mozzarella cheese on the

top. Delicious! As long as I only eat enough to fill my esophagus

and let gravitational pull work its magic, I do O.K. I can eat soup and a

variety of soft foods. Eating was never a huge priority, so I am able to

manage. I have my few days a month of " nothing by mouth " , but

usually it's after lifting too much or stress.

My totally " off the wall " 12 year old is finally being diagnosed via

tele-conference this Thursday from Toronto. It's totally bizarre, but I know caffeine in coffee and pop

settles him to the point we can hold a conversation. I did some reading,

and it makes sense in regard to ADHD. Cliff has two cups of coffee before

School to relax. If he survives a whole day in School, he gets a pop and

as long as he wants on the X-box. It sounds crazy, but I'm working together

with a psychologist, child care worker, family support councillor. We're

doing whatever helps him cope. The ODD is getting bearable, but by 11:00 P.M. I'm so glad another day is over! The Children's Aid Society

is providing as many resources as they are able, but I must say, Cliff is the

most challenging child out of 37. I'll be glad when the day treatment

program begins.

It's finally above freezing here. Cliff has decided to jog with me each

day now that it's warmed up a bit. (I bought him a Discman for jogging)

Maybe that will help him relax and actually sleep at night. I think it's

time for me to join an ODD/ADHD support group :-)

I

need sleep!!!

.

Re: SUCCESS

wrote:

When I do get to the point where I can't function day

to day, I'll be

speaking with Debbi about hotel prices and heading

to the States.

We

oughta try to get a Group Discount at The Cleveland Clinic.... me, Maggie,

.... who else wants to join us?

)

Deb

[Guest guest]

> We oughta try to get a Group Discount at The Cleveland Clinic....

me, Maggie, .... who else wants to join us?

>

> )

>

> Deb

shoot if that is the case , im on my way.... from what i have heard

about the CC , sounds like one of the best ones around....

but i do plan on seeing the one guy in san jose to see what he can do

and see how good he is....

[Guest guest]

Man, can you imagine the PARTY we'd have if all of us got together???? LOLDeb

You can count me in! If ever decides to come to the states and go to CC and you guys were to have back to back myotomies, I wouldn’t want to miss that for the world! I’d be on the first flight out so I could be there to take care of you guys when you wake up! :-)

Sandi

wrote:

When I do get to the point where I can't function day to day, I'll bespeaking with Debbi about hotel prices and heading to the States.

We oughta try to get a Group Discount at The Cleveland Clinic.... me, Maggie, .... who else wants to join us?

)Deb

[Guest guest]

Man, can you imagine the PARTY we'd have if all of us got together???? LOLDeb

Ahhhhhhh- but what would you EAT?

____________________________________________________ IncrediMail - Email has finally evolved - Click Here

[Guest guest]

, is the 12yo medicated for his ADHD? Caffeine is a stimulant, and as you probably know, ADD/ADHD meds are stimulants (some are classified as amphetamines, as I recall, and they're treated as a controlled substance like a narcotic.)

I hope for your sake AND his that you can get some good treatment ideas out of the teleconferencing this week!Debbi

My totally "off the wall" 12 year old is finally being diagnosed via tele-conference this Thursday from Toronto. It's totally bizarre, but I know caffeine in coffee and pop settles him to the point we can hold a conversation. I did some reading, and it makes sense in regard to ADHD. Cliff has two cups of coffee before School to relax. If he survives a whole day in School, he gets a pop and as long as he wants on the X-box. It sounds crazy, but I'm working together with a psychologist, child care worker, family support councillor. We're doing whatever helps him cope. The ODD is getting bearable, but by 11:00 P.M. I'm so glad another day is over! The Children's Aid Society is providing as many resources as they are able, but I must say, Cliff is the most challenging child out of 37. I'll be glad when the day treatment program begins.

It's finally above freezing here. Cliff has decided to jog with me each day now that it's warmed up a bit. (I bought him a Discman for jogging) Maybe that will help him relax and actually sleep at night. I think it's time for me to join an ODD/ADHD support group :-)

I need sleep!!!

.

[Guest guest]

OMG….you bet I can imagine!!!! But I think we’d better buy

stock in the Kleenex Corp.!!!!

STS(MSTI)INC

Re: SUCCESS

Man,

can you imagine the PARTY we'd have if all of us got together???? LOL

Deb

You can count me in! If

ever decides to come to the states and go to CC and you guys were to have

back to back myotomies, I wouldn’t want to miss that for the world!

I’d be on the first flight out so I could be there to take care of you

guys when you wake up! :-)

Sandi

wrote:

When I do get to the point where I can't function day

to day, I'll be

speaking with Debbi about hotel prices and heading

to the States.

We

oughta try to get a Group Discount at The Cleveland Clinic.... me, Maggie,

.... who else wants to join us?

)

Deb

[Guest guest]

Can we get a caterer who will set a meal just for us?

Imagine it...salmon, applesauce, humus, mashed potatoes, feta cheese, tofu, tahbuli, ...blenders at every table...your choice of hot, warm, cold, or carbonated warm chasers...quick access tot he closest restroom for vomiting...smooth muscle relaxant cocktails,... walls decorated with pneumatic balloons (4cm diameter make the best decorations)...badges on every person listing their last treatment...manometry tubes for drinking straws...we could play pins the endoscope on the pharynx...

Save a seat for Boston Pete

-----Original Message-----From: Cindi Wilmot [mailto:cindiscandles@...]Sent: Tuesday, March 23, 2004 8:21 AMachalasia Subject: Re: SUCCESS

Man, can you imagine the PARTY we'd have if all of us got together???? LOLDeb

Ahhhhhhh- but what would you EAT?

____________________________________________________ IncrediMail - Email has finally evolved - Click Here

[Guest guest]

Boston “Sweety” Pete…you

crack me up!!!

I’ll bring the silver buckets!!!

Sounds like it’s going to be a good

time!!!!

Sandi

Re: SUCCESS

Man, can you imagine

the PARTY we'd have if all of us got together???? LOL

Deb

Ahhhhhhh- but what

would you EAT?

____________________________________________________

IncrediMail

- Email has finally evolved - Click Here

[Guest guest]

In a message dated 3/23/2004 10:07:36 AM Eastern Standard Time, peter.scott@... writes:

Imagine it...salmon, applesauce, humus, mashed potatoes, feta cheese, tofu, tahbuli, ...blenders at every table...your choice of hot, warm, cold, or carbonated warm chasers...quick access tot he closest restroom for vomiting...smooth muscle relaxant cocktails,... walls decorated with pneumatic balloons (4cm diameter make the best decorations)...badges on every person listing their last treatment...manometry tubes for drinking straws...we could play pins the endoscope on the pharynx...

Save a seat for Boston Pete

You guys crack me up! LOL

I really needed this today!

Jan in Northern KY

[Guest guest]

I can't believe that there are so many people who understand, no one I know has ever heard of it--everyone just sayd oh, do you have Gerd, and I am almost to the point where I am like yeah, it's Gerd or Acid Reflux--once I explain to people, they just look at me blankly or say things like, oh how about smaller bites, or prop your head up at night. does anyone else get woke up at night with the chest pain?

Re: SUCCESS

In a message dated 3/23/2004 10:07:36 AM Eastern Standard Time, peter.scott@... writes:

Imagine it...salmon, applesauce, humus, mashed potatoes, feta cheese, tofu, tahbuli, ...blenders at every table...your choice of hot, warm, cold, or carbonated warm chasers...quick access tot he closest restroom for vomiting...smooth muscle relaxant cocktails,... walls decorated with pneumatic balloons (4cm diameter make the best decorations)...badges on every person listing their last treatment...manometry tubes for drinking straws...we could play pins the endoscope on the pharynx...

Save a seat for Boston Pete

You guys crack me up! LOL

I really needed this today!

Jan in Northern KY

[Guest guest]

Did anyone say to you Cut your meat up in small bites Hey stop and smell the roses

-- Re: SUCCESS

I can't believe that there are so many people who understand, no one I know has ever heard of it--everyone just sayd oh, do you have Gerd, and I am almost to the point where I am like yeah, it's Gerd or Acid Reflux--once I explain to people, they just look at me blankly or say things like, oh how about smaller bites, or prop your head up at night. does anyone else get woke up at night with the chest pain?

Re: SUCCESS

In a message dated 3/23/2004 10:07:36 AM Eastern Standard Time, peter.scott@... writes:

Imagine it...salmon, applesauce, humus, mashed potatoes, feta cheese, tofu, tahbuli, ...blenders at every table...your choice of hot, warm, cold, or carbonated warm chasers...quick access tot he closest restroom for vomiting...smooth muscle relaxant cocktails,... walls decorated with pneumatic balloons (4cm diameter make the best decorations)...badges on every person listing their last treatment...manometry tubes for drinking straws...we could play pins the endoscope on the pharynx...

Save a seat for Boston Pete

You guys crack me up! LOL

I really needed this today!

Jan in Northern KY

____________________________________________________ IncrediMail - Email has finally evolved - Click Here

[Guest guest]

In a message dated 3/25/2004 6:22:48 AM Eastern Standard Time, shawna7@... writes:

I can't believe that there are so many people who understand, no one I know has ever heard of it--everyone just sayd oh, do you have Gerd, and I am almost to the point where I am like yeah, it's Gerd or Acid Reflux--once I explain to people, they just look at me blankly or say things like, oh how about smaller bites, or prop your head up at night. does anyone else get woke up at night with the chest pain?

Oh yes, for sure. Well, either chest pain, or coughing, or the last several months, I fall asleep fine, but wake up after 3 hrs of sleep and find it unable to get back to sleep. I finally told my general GP doc about it(the lack of good 8 hrs sleep a night). I have to get up at 6 a.m. to take my h.s. freshman daughter to school and myself to work with disabled adults, and 3-4 hrs sleep a night was'nt cutting it.

My doc prescribed elavil, a anti-depressant.

I guess the sleeping problem could be a form of depression from all of these swallowing disorder issues, I don't know.

After a while, all of these physical manifestations of dysphagia can take their toll.

Jan in Northern KY.