New to group

[Guest guest]

I will go with surgery HELLER MYOTOMY DOR FUNDOPLICATION. Dilation and drugs are

temp fix..

________________________________

From: shanachunt <shanachunt@...>

achalasia

Sent: Wed, April 6, 2011 10:07:35 AM

Subject: New to group

 

I was just diagnosed with achalasia. I am looking at options...surgery, the

balloon procedure or drugs. It sounds as if the surgery is not without

complications, nor is it a permanent fix. Any thoughts or suggestions? I have

also start looking for homeopathics in lieu surgery. Has anyone tried a natural

remedy?

[Guest guest]

Dana, I'm so sorry to hear your father isn't doing well. Depression is common

with us, especially if we can't eat. I wish you and him the best. Sandy

>

> I recently joined the group to learn what I could from others diagnosed with

> A in an effort to help my Dad.  I would agree with - make sure you

> research and find a doctor who knows what they are doing and also understand

the

> procedures well as well as the outcome expectations.

>

> My Dad has had A for many years and went through several balloon dilations

which

> would last maybe a year or so. He finally had the myotomy in 2005 and then

had

> to go through repeats of balloon dilations when he started having a lot of

> problems again.  He had surgery in May 2009 to remove his esophagus (made a

tube

> with stomatch and attached his stomach at his throat) and his health has gone

> downhill from there.  He currently is not doing well, cannot keep much food

down

> (much worse than before the surgery!) and has lost so much weight he is

> malnourished.  We are now looking into alternatives - a nutritionist and

maybe

> alternative medicine as well.  He seems depressed, has been out of work for

> almost a year, and generally seems to have had some personality changes,

perhaps

> from the medication they are giving him.

>

> We haven't given up hope and we are working to find other options/ways to help

> him get better but in hindsight, I would encourage you to fully research your

> doctor before having surgery and make sure that the procedure they plan to do

is

> up to date and that they have experience because it's terrible to go through

> something to get better and find that it makes you worse, especially for your

> family.

>

> Dana n, NC.

>

>

>

>

> ________________________________

> From: Montoya <medhelpinfo@...>

> achalasia

> Sent: Wed, April 6, 2011 3:35:03 PM

> Subject: Re: New to group

>

>  

> Welcome to our Group!

>

> Sorry to hear that you have been diagnosed with Achalasia.  I have had

achalasia

>

> for over 22yrs.  I went undiagnosed for most of that time and suffered

through

> it.  If you could tell us a little more info about your situation, like how

long

>

> have you had it and in what area you live? 

>

> Everyone is different.  I was extremely scared about having the myotomy

surgery,

>

> but towards the last few years, I was barely able to keep things down.  This

> group taught me to remember that surgery is mostly successful if you can find

> the best of the best doctors, who KNOW ACHALASIA and have done MANY of these

> surgerys. 

>

> Having a top surgeron is vital to the outcome, and also you must take into

> consideration of where you are at in this condition.  I had surgery last

August,

>

> I have had great success and no regrets.  My surgeon feels that I am fixed

for a

>

> very long time, perhaps the rest of  my life.  I sure hope she is right.  I

feel

>

> so much better and can finally eat almost like a normal person. 

>

> I had a myotomy with Dor fundo.  You must do your research and then make your

> decision on whats best for you.  I was debating on either surgery or balloon

> dilation.  I finally picked surgery because it seems to be the most lasting

> treatment, I read the research, the success rate was 90%. 

>

> Please keep us posted and tell us more about yourself. 

>

> Julee So Calif.

>

> ________________________________

> From: shanachunt <shanachunt@...>

> achalasia

> Sent: Wed, April 6, 2011 7:07:35 AM

> Subject: New to group

>

>  

> I was just diagnosed with achalasia. I am looking at options...surgery, the

> balloon procedure or drugs. It sounds as if the surgery is not without

> complications, nor is it a permanent fix. Any thoughts or suggestions? I have

> also start looking for homeopathics in lieu surgery. Has anyone tried a

natural

> remedy?

>

>

[Guest guest]

Dana - I am also in NC - on the Outer Banks - where are you/your dad? I also had

an esophagectomy just over 3 years ago and I'm doing great so don't give up hope

- where was his done? Who is his surgeon? What are they doing for him right now?

Like everything - done right - an esophagectomy is no walk in the park but the

results can be very good.

Feel free to call me if you want - I would love to help.

If you're not too far away - maybe we can do a meetup - your dad may really

appreciate being able to meet someone who 'gets it'

my number is 252-256-3843 - I don't typically answer numbers I don't recognize

but if you email me and let me know when you are calling or leave a message -

I'll get back with you.

Glad you found us!

~ in NC

>

> I recently joined the group to learn what I could from others diagnosed with

> A in an effort to help my Dad.  I would agree with - make sure you

> research and find a doctor who knows what they are doing and also understand

the

> procedures well as well as the outcome expectations.

>

> My Dad has had A for many years and went through several balloon dilations

which

> would last maybe a year or so. He finally had the myotomy in 2005 and then

had

> to go through repeats of balloon dilations when he started having a lot of

> problems again.  He had surgery in May 2009 to remove his esophagus (made a

tube

> with stomatch and attached his stomach at his throat) and his health has gone

> downhill from there.  He currently is not doing well, cannot keep much food

down

> (much worse than before the surgery!) and has lost so much weight he is

> malnourished.  We are now looking into alternatives - a nutritionist and

maybe

> alternative medicine as well.  He seems depressed, has been out of work for

> almost a year, and generally seems to have had some personality changes,

perhaps

> from the medication they are giving him.

>

> We haven't given up hope and we are working to find other options/ways to help

> him get better but in hindsight, I would encourage you to fully research your

> doctor before having surgery and make sure that the procedure they plan to do

is

> up to date and that they have experience because it's terrible to go through

> something to get better and find that it makes you worse, especially for your

> family.

>

> Dana n, NC.

>

>

>

>

> ________________________________

> From: Montoya <medhelpinfo@...>

> achalasia

> Sent: Wed, April 6, 2011 3:35:03 PM

> Subject: Re: New to group

>

>  

> Welcome to our Group!

>

> Sorry to hear that you have been diagnosed with Achalasia.  I have had

achalasia

>

> for over 22yrs.  I went undiagnosed for most of that time and suffered

through

> it.  If you could tell us a little more info about your situation, like how

long

>

> have you had it and in what area you live? 

>

> Everyone is different.  I was extremely scared about having the myotomy

surgery,

>

> but towards the last few years, I was barely able to keep things down.  This

> group taught me to remember that surgery is mostly successful if you can find

> the best of the best doctors, who KNOW ACHALASIA and have done MANY of these

> surgerys. 

>

> Having a top surgeron is vital to the outcome, and also you must take into

> consideration of where you are at in this condition.  I had surgery last

August,

>

> I have had great success and no regrets.  My surgeon feels that I am fixed

for a

>

> very long time, perhaps the rest of  my life.  I sure hope she is right.  I

feel

>

> so much better and can finally eat almost like a normal person. 

>

> I had a myotomy with Dor fundo.  You must do your research and then make your

> decision on whats best for you.  I was debating on either surgery or balloon

> dilation.  I finally picked surgery because it seems to be the most lasting

> treatment, I read the research, the success rate was 90%. 

>

> Please keep us posted and tell us more about yourself. 

>

> Julee So Calif.

>

> ________________________________

> From: shanachunt <shanachunt@...>

> achalasia

> Sent: Wed, April 6, 2011 7:07:35 AM

> Subject: New to group

>

>  

> I was just diagnosed with achalasia. I am looking at options...surgery, the

> balloon procedure or drugs. It sounds as if the surgery is not without

> complications, nor is it a permanent fix. Any thoughts or suggestions? I have

> also start looking for homeopathics in lieu surgery. Has anyone tried a

natural

> remedy?

>

>

[Guest guest]

,

It's good to hear that someone is doing well after this surgery.  Dad lives in

Tar Heel and I'm outside of Charlotte.  His surgery was done at Duke Medical

(Raleigh) by Dr. Onaitus.  Right now, he's been " released " to where he doesn't

go back for 6 months but I don't think the doctor really understands what's

happening with him - he sees the surgery as " successful " but Dad seems to be

much worse than before and not truly getting better.  He's on Reglan and

Gaviston medications along with some other things.  The main problems is that

he

doesn't sleep well at night and has had a cough ever since the surgery that

causes him to cough so hard that he regurgitates his food so he does not get

enough nutrition to keep his weight maintained...he continues to lose weight and

rest.

I would love to talk to you, perhaps during one of my trips home so Mom and I

could talk to you together.  We're looking for ideas and suggestions for

help. 

I'm not sure if we could plan a meetup but it might be possible...these days,

it's tough to get him to go very far from home.

Thanks so much for the encouragement (and Sandy, yours, too).

-Dana in NC

________________________________

From: zlmmom1 <mcnairmichelle@...>

achalasia

Sent: Thu, April 7, 2011 10:02:37 AM

Subject: Re: New to group

 

Dana - I am also in NC - on the Outer Banks - where are you/your dad? I also had

an esophagectomy just over 3 years ago and I'm doing great so don't give up hope

- where was his done? Who is his surgeon? What are they doing for him right now?

Like everything - done right - an esophagectomy is no walk in the park but the

results can be very good.

Feel free to call me if you want - I would love to help.

If you're not too far away - maybe we can do a meetup - your dad may really

appreciate being able to meet someone who 'gets it'

my number is 252-256-3843 - I don't typically answer numbers I don't recognize

but if you email me and let me know when you are calling or leave a message -

I'll get back with you.

Glad you found us!

~ in NC

>

> I recently joined the group to learn what I could from others diagnosed

with

> A in an effort to help my Dad.  I would agree with - make sure you

> research and find a doctor who knows what they are doing and also understand

>the

>

> procedures well as well as the outcome expectations.

>

> My Dad has had A for many years and went through several balloon dilations

>which

>

> would last maybe a year or so. He finally had the myotomy in 2005 and then

had

>

> to go through repeats of balloon dilations when he started having a lot of

> problems again.  He had surgery in May 2009 to remove his esophagus (made a

>tube

>

> with stomatch and attached his stomach at his throat) and his health has

gone

> downhill from there.  He currently is not doing well, cannot keep much food

>down

>

> (much worse than before the surgery!) and has lost so much weight he is

> malnourished.  We are now looking into alternatives - a nutritionist and

maybe

>

> alternative medicine as well.  He seems depressed, has been out of work for

> almost a year, and generally seems to have had some personality changes,

>perhaps

>

> from the medication they are giving him.

>

> We haven't given up hope and we are working to find other options/ways to help

> him get better but in hindsight, I would encourage you to fully research your

> doctor before having surgery and make sure that the procedure they plan to do

>is

>

> up to date and that they have experience because it's terrible to go through

> something to get better and find that it makes you worse, especially for your

> family.

>

> Dana n, NC.

>

>

>

>

> ________________________________

> From: Montoya <medhelpinfo@...>

> achalasia

> Sent: Wed, April 6, 2011 3:35:03 PM

> Subject: Re: New to group

>

>  

> Welcome to our Group!

>

> Sorry to hear that you have been diagnosed with Achalasia.  I have had

>achalasia

>

>

> for over 22yrs.  I went undiagnosed for most of that time and suffered

through

>

> it.  If you could tell us a little more info about your situation, like how

>long

>

>

> have you had it and in what area you live? 

>

> Everyone is different.  I was extremely scared about having the myotomy

>surgery,

>

>

> but towards the last few years, I was barely able to keep things down. 

This

> group taught me to remember that surgery is mostly successful if you can find

> the best of the best doctors, who KNOW ACHALASIA and have done MANY of these

> surgerys. 

>

> Having a top surgeron is vital to the outcome, and also you must take into

> consideration of where you are at in this condition.  I had surgery last

>August,

>

>

> I have had great success and no regrets.  My surgeon feels that I am fixed

for

>a

>

>

> very long time, perhaps the rest of  my life.  I sure hope she is

right.  I

>feel

>

>

> so much better and can finally eat almost like a normal person. 

>

> I had a myotomy with Dor fundo.  You must do your research and then make

your

> decision on whats best for you.  I was debating on either surgery or

balloon

> dilation.  I finally picked surgery because it seems to be the most lasting

> treatment, I read the research, the success rate was 90%. 

>

> Please keep us posted and tell us more about yourself. 

>

> Julee So Calif.

>

> ________________________________

> From: shanachunt <shanachunt@...>

> achalasia

> Sent: Wed, April 6, 2011 7:07:35 AM

> Subject: New to group

>

>  

> I was just diagnosed with achalasia. I am looking at options...surgery, the

> balloon procedure or drugs. It sounds as if the surgery is not without

> complications, nor is it a permanent fix. Any thoughts or suggestions? I have

> also start looking for homeopathics in lieu surgery. Has anyone tried a

natural

>

> remedy?

>

>

[Guest guest]

I was on Reglan for awhile. It is a TERRIBE drug. See message 61167.

I was on an equivalent drug I had to get from Canada. I helped digest the food.

Once I stopped the PPI's like Nexium and Prilosec, I did not need that drug.

http://www.reglansideeffectslawsuit.com/

Gaviston is great, get off the Reglan. Reglan caused me to shake, takes a bit of

time to get over it.

See the FDA warnings.

Reglan Draws FDA Recall

On February 26th 2009, over two million people in the United States were told

they could develop serious neurological muscle disorders because of the use of

metoclopramide, more commonly known as Reglan.

The FDA required all manufacturers of Reglan to place a black box warning on the

label. This warning is the strongest warning the FDA requires because of the

serious and even life-threatening effects of the drug. While Reglan is used to

treat heartburn and certain gastrointestinal disorders by speeding up the rate

at which the stomach empties, it is also linked to a serious condition called

Tardive Dyskinesia.

Tardive Dyskinesia and Reglan

Tardive Dyskinesia describes involuntary movements throughout one's body

including the face, mouth, tongue, lips, and other body parts. Long term users

of the drug, women, children, and the elderly have a greater risk of developing

this condition. There is no known cure for Tardive Dyskinesia and symptoms may

still persist even after you stop taking Reglan.

Ray CA OC

> >

> > I recently joined the group to learn what I could from others diagnosed

with

> > A in an effort to help my Dad.  I would agree with - make sure

you

> > research and find a doctor who knows what they are doing and also understand

> >the

> >

> > procedures well as well as the outcome expectations.

> >

> > My Dad has had A for many years and went through several balloon dilations

> >which

> >

> > would last maybe a year or so. He finally had the myotomy in 2005 and

then had

> >

> > to go through repeats of balloon dilations when he started having a lot of

> > problems again.  He had surgery in May 2009 to remove his esophagus (made

a

> >tube

> >

> > with stomatch and attached his stomach at his throat) and his health has

gone

>

> > downhill from there.  He currently is not doing well, cannot keep much

food

> >down

> >

> > (much worse than before the surgery!) and has lost so much weight he is

> > malnourished.  We are now looking into alternatives - a nutritionist and

maybe

> >

> > alternative medicine as well.  He seems depressed, has been out of work

for

> > almost a year, and generally seems to have had some personality changes,

> >perhaps

> >

> > from the medication they are giving him.

> >

> > We haven't given up hope and we are working to find other options/ways to

help

>

> > him get better but in hindsight, I would encourage you to fully research

your

> > doctor before having surgery and make sure that the procedure they plan to

do

> >is

> >

> > up to date and that they have experience because it's terrible to go through

> > something to get better and find that it makes you worse, especially for

your

> > family.

> >

> > Dana n, NC.

> >

> >

> >

> >

> > ________________________________

> > From: Montoya <medhelpinfo@>

> > achalasia

> > Sent: Wed, April 6, 2011 3:35:03 PM

> > Subject: Re: New to group

> >

> >  

> > Welcome to our Group!

> >

> > Sorry to hear that you have been diagnosed with Achalasia.  I have had

> >achalasia

> >

> >

> > for over 22yrs.  I went undiagnosed for most of that time and suffered

through

> >

> > it.  If you could tell us a little more info about your situation, like

how

> >long

> >

> >

> > have you had it and in what area you live? 

> >

> > Everyone is different.  I was extremely scared about having the myotomy

> >surgery,

> >

> >

> > but towards the last few years, I was barely able to keep things down. 

This

> > group taught me to remember that surgery is mostly successful if you can

find

> > the best of the best doctors, who KNOW ACHALASIA and have done MANY of these

> > surgerys. 

> >

> > Having a top surgeron is vital to the outcome, and also you must take into

> > consideration of where you are at in this condition.  I had surgery last

> >August,

> >

> >

> > I have had great success and no regrets.  My surgeon feels that I am

fixed for

> >a

> >

> >

> > very long time, perhaps the rest of  my life.  I sure hope she is

right.  I

> >feel

> >

> >

> > so much better and can finally eat almost like a normal person. 

> >

> > I had a myotomy with Dor fundo.  You must do your research and then make

your

>

> > decision on whats best for you.  I was debating on either surgery or

balloon

> > dilation.  I finally picked surgery because it seems to be the most

lasting

> > treatment, I read the research, the success rate was 90%. 

> >

> > Please keep us posted and tell us more about yourself. 

> >

> > Julee So Calif.

> >

> > ________________________________

> > From: shanachunt <shanachunt@>

> > achalasia

> > Sent: Wed, April 6, 2011 7:07:35 AM

> > Subject: New to group

> >

> >  

> > I was just diagnosed with achalasia. I am looking at options...surgery, the

> > balloon procedure or drugs. It sounds as if the surgery is not without

> > complications, nor is it a permanent fix. Any thoughts or suggestions? I

have

> > also start looking for homeopathics in lieu surgery. Has anyone tried a

natural

> >

> > remedy?

> >

> >

[Guest guest]

Hi Tom,

 

Good luck on your surgery.  I am late deafened as well. I lost the hearing in

my left ear in 2001 and my right ear in 2008 when I was 35.

I have bilateral ci's.  I actually have Freedoms and N5's.

 

You will be so pleased to be able to have a conversation with your spouse

again!  Just be patient because it takes time and practice.  My experience as

a late deafened adult is that it is NOT normal hearing, it is NOT what you

remember.  A lot of things can be close but its not the same. 

 

I still struggle with music and the telephone but I keep on keeping on.

After you are activated the suggestions to practice include following along to

books on tape, the N5 also comes with a cd called Sound and Way beyond for your

computer so that you can practice. 

 

Take care

Lori

From: rver0347 <tmhagney@...>

Subject: New to group

Date: Sunday, April 17, 2011, 2:34 PM

 

Hi CI Hear,

Let me introduce myself. My name is Tom. I am a late deafened adult male, age

64, and have lost my hearing gradually over the past 30 years. I finally

qualified for a Cochlear Implant in the past 5 months. Will be implanted on this

coming Friday, April 22nd. Device will be a Cochlear Nucleus 5.

Presently a member of ALDA and really enjoy that group. I imagine that several

of the members there are also members on this forum.

I have a very, very understanding wife, , that supports me and assists me

with my hearing needs. Hopefully, we will be attending the ALDA Con in

Indianapolis, IN this fall. Many of the members of ALDA are CI users. It was

because of these CI users that I started pursuing a CI for myself.

I have been educating myself about the CI surgery and now have a pretty good

idea what lies ahead.

What I would like to learn from this group is how to get trained with my new

device. I realize that an audiologist will start me with the initial training

when the device is first turned on. I'd like to learn what I can do for myself

to speed up and fortify my hearing.

Thank you in advance for your understanding,

Tom & Hagney

[Guest guest]

Tom

Thanks for the update and keep us posted as you continue this journey.

Suzanne W - Nebraska

Freedom - R ear

Surgery 1/14/08 Activation 2/14/08

Alpha ENT Clinic Ft. , CO

Dr. W. Conlon

Hi Group,

A few of you contacted me off list and requested an update on the surgery.

I was rolled into surgery at 11:30 am yesterday and the next thing I

remember I was looking at the clock in recovery at 2:25 pm. My wife and I

walked out of the hospital at 4:00 pm, so I guess everything went okay.

I'm wearing that protective cuff to hold the gauze in place. The real pain

is the large muscle that runs up behind the ear.

Ear noise is off the charts. Roaring at times. Also listening to own heart

beat is a bit weird. Hopefully these noises will disappear with time.

Hard to believe it has only been 24 hours since I walked out of the

hospital. Haven't been getting good sleep, just drug induced rest.

Thanks to all of you for the support.

Tom

[Guest guest]

Howdy Tom! I had the " roaring train " post surgery as well. Took it easy two

days after the implantation then went back to my office job. Once I was

activated, the roar and ringing went away! Best wishes for a good recovery and

activation.

Neely in Dallas Texas

> >

> > Hi Tom,

> >  

> > Good luck on your surgery.  I am late deafened as well. I lost the hearing

in my left ear in 2001 and my right ear in 2008 when I was 35.

> > I have bilateral ci's.  I actually have Freedoms and N5's.

> >  

>

[Guest guest]

Hello Kim,  If you would like to talk about this disease I am willing to do

so. 

You can call me anytime if you have any questions.  I have had the disease for

about 20 years now.  My phone number is 478-919-8813 and I live in the middle

Georgia area.

<FONT face= " comic sans ms " color=#ff0000 size=5> in Georgia </FONT><IMG

src= " http://us.i1.yimg.com/us.yimg.com/i/mesg/tsmileys2/04.gif " >

________________________________

From: kimellenbailey <kimellenbailey@...>

achalasia

Sent: Tue, May 10, 2011 8:34:54 AM

Subject: new to group

 

hello. i am new to the group . last year after much trouble.. thinking i had a

stricture,they went in to see and dialate and i found that i had A. All this is

such a revolting turn of events. i have become the thing that i find repulsive.

throwing up into a cup when i am on errands. who would have ever thought i would

need a salvia cup.and one by the bed as sometimes i get so tired running back to

the potty to let salavia drain out... i am embarrassed at my self.i found that i

cannot have my favorite food, salad, can do grilled fish and sometimes chicken

if i chew if to pulp and learned to eat very slowly. i talked to sandy about

this and she was so kind to respond. Do any of ya'll take any medication other

than anti acid stuff? i was wondering if anyone found success -even for a short

time with anything at all? i was thinking about meds that help with nerves or

something.. i have been on a throw up binge for almost a week now and very

tired. carbonated seems to work better than anything for me. small sips . takes

all day to drink a 16 oz one.i worry about gtting dehydrated.. although last

week i was better than this. Does it sort of come and go? of maybe just get

worse in times? i ate 3 tiny potatos yesterday. and 2 weiners the day before. i

tried a bite of smoked sausage and it didnt work, i think it was to grainy, you

know how sausage has those tiny ball like peices of meat in it? i wasnt too

overweight.. just some, i have lost a lot. Do any of you all have trouble

keeping weight on? i have been concerned about that. there is no doctor that i

have found that is very experienced in A around here. they do the same we do,

and read on the web( at least that is what i think). YOU do Not know how

relieved i was to find thi group. i feel so alone. .. thank you so very very

much, and i am Kim .. in Louisiana

[Guest guest]

Welcome kim. You are not alone. This site offers practical ways to navigate

health care systems while providing emotional support to those whom suffer with

achalasia. This combination of information and support is invaluable to me.

These folks understand your fears, embarrassment, anxiety. The information I

received here empowered me to take charge of my sons health care plan and

emboldened me to demand the best. They did this while wiping my tears and at

times laughing at the absurdity of it all. One of the first suggestions I

received was to find a competent doctor schooled in the knowledge of achalasia.

So I e mailed the doctors suggested ( thanks to michelle), traveled where I had

to travel (cleveland clinic), got tested where I had traveled( monomery and

barium swallow), fought insurance companies ( special thanks to notan), and

waited in the waiting room as my 16 year old had a heller myotomy with a dor (

thank you dr thomas rice). U are in the right place. There are angels here that

will guide u. I'd b lying if I told u it was easy. The emotional, physical and

logistical maneuvering was my bin lauden. But in the end we have emerged

victorious. I would encourage u to not delay in your journey. Delays are already

built in so get busy taking charge. We r here for u....angela

Sent from my Verizon Wireless BlackBerry

new to group

hello. i am new to the group . last year after much trouble.. thinking i had a

stricture,they went in to see and dialate and i found that i had A. All this is

such a revolting turn of events. i have become the thing that i find repulsive.

throwing up into a cup when i am on errands. who would have ever thought i would

need a salvia cup.and one by the bed as sometimes i get so tired running back to

the potty to let salavia drain out... i am embarrassed at my self.i found that i

cannot have my favorite food, salad, can do grilled fish and sometimes chicken

if i chew if to pulp and learned to eat very slowly. i talked to sandy about

this and she was so kind to respond. Do any of ya'll take any medication other

than anti acid stuff? i was wondering if anyone found success -even for a short

time with anything at all? i was thinking about meds that help with nerves or

something.. i have been on a throw up binge for almost a week now and very

tired. carbonated seems to work better than anything for me. small sips . takes

all day to drink a 16 oz one.i worry about gtting dehydrated.. although last

week i was better than this. Does it sort of come and go? of maybe just get

worse in times? i ate 3 tiny potatos yesterday. and 2 weiners the day before. i

tried a bite of smoked sausage and it didnt work, i think it was to grainy, you

know how sausage has those tiny ball like peices of meat in it? i wasnt too

overweight.. just some, i have lost a lot. Do any of you all have trouble

keeping weight on? i have been concerned about that. there is no doctor that i

have found that is very experienced in A around here. they do the same we do,

and read on the web( at least that is what i think). YOU do Not know how

relieved i was to find thi group. i feel so alone. .. thank you so very very

much, and i am Kim .. in Louisiana

[Guest guest]

You are the first person I have seen on here that did not do the wrap. My

son did not do the wrap as well so I am glad to have someone else here to

relate to.

Cullen's mom

In a message dated 5/10/2011 8:32:46 P.M. Central Daylight Time,

sharon_cline@... writes:

To Kim:

How close to Houston are you? I live in Pasadena and I will not loose my

doctor, he has done numerous balloon dilitations for me. I have had A for

34 + years. I take Donnatol (1 to 6 every day) for the lower E spasms.

Zegrid Extended Relief (1 times daily) and Tagamet (800 mg) 3 times daily for

the acid and Buspar (10 mg 3 times daily I also see a pain control for

pain medication. I have had the Heller Myotomy without the fundoplication.

I have learned to take a deep breath and push and get food down most of

the time. I never sleep flat, I am always elevated. Keep the head at least

8 inches above the feet when lying down (is what I have been told). I was

taking Procardia for the spasms in the upper E, but had to stop taking due

to the elevation in heart rate. But it did work. I have been told to eat

6 or more small meals aday and to stay upright for at least 2 - 3 hours

before going to bed. I also have a GI Cocktail (a

mixture that will deaden as I drink it), this is my last option as I hate

taking it. I had my first balloon dilitation in May of 1979 and my Myotomy

in March of 1999. Before the Myotomy I could not eat anything cold as

that would start the spasms to the extreme. I traded this when I had the

surgery to not being able to eat bread. I suppliment my intake of bread with

corn and popcorn. Since this seems to be a nerve degenerative thing, I also

take B-Complex and B-12 and that seems to help as the B vitamins work to

keep the nervous system healthy.

The one thing I have found from all the reading is that every person is

different and the disease will treat each person different in some manner.

I also suggest that you find a good doctor that knows about the disease.

Best Regards,

Sharon Cline

--- On Tue, 5/10/11, Montoya <_medhelpinfo@..._

(mailto:medhelpinfo@...) > wrote:

From: Montoya <_medhelpinfo@..._ (mailto:medhelpinfo@...)

>

Subject: Re: new to group

_achalasia _ (mailto:achalasia )

Date: Tuesday, May 10, 2011, 6:21 PM

Hello Kim and Welcome!

Most of us that have achalasia find ourselves at exactly this same point

as

you. I struggled for years! I can tell you that they tried SO many

different

medications to help, but none really worked for very long, most had bad

side

effects. I think having good days or good weeks and then finding yourself

in a

really bad week is how it goes. I actually got to the point that I wasn't

having any good days! You must educate yourself about this disease. It

will

not go away, it just seems to worsen over time.

From everything that I have read, there are usually 3 options that can

work.

There is balloon dilitation, which is usually helpful and can last on

average a

couple of years (more for some and less for others), then there is botox

(unless

you are old, this should not be considered because it can ruin your

chances of

having a successful surgery in the future). There is sugery, which is a

Heller

Myotomy, with fundoplication ( I had a Dor). The ballon or the surgery

are the

best options for most. In any case, you must make sure that the doctors

that

work with you are the BEST of the BEST with achalasia. There are hackers

out

there that can really mess you up. In this group, we have people that can

recommend a good top doctor.

I can tell you, I had achalasia for 22yrs, and I was so sick of living my

life

in torture. I found this group in 2004, I began learning about achalasia

and

received help in finding a great surgeon. Last year, I finally did it, I

had

the surgery. It's crazy that it took so long to find help, but now I can

eat

and not regurg food all day long! I am doing very well with swallowing

for

almost a year now. I have no regrets.

Please feel free to contact any of us and please think of what you can do

to get

some help?? We are here to help you.

Best regards, Julee SoCalif.

________________________________

From: kimellenbailey <_kimellenbailey@..._

(mailto:kimellenbailey@...) >

_achalasia _ (mailto:achalasia )

Sent: Tue, May 10, 2011 5:34:54 AM

Subject: new to group

hello. i am new to the group . last year after much trouble.. thinking i

had a

stricture,they went in to see and dialate and i found that i had A. All

this is

such a revolting turn of events. i have become the thing that i find

repulsive.

throwing up into a cup when i am on errands. who would have ever thought i

would

need a salvia cup.and one by the bed as sometimes i get so tired running

back to

the potty to let salavia drain out... i am embarrassed at my self.i found

that i

cannot have my favorite food, salad, can do grilled fish and sometimes

chicken

if i chew if to pulp and learned to eat very slowly. i talked to sandy

about

this and she was so kind to respond. Do any of ya'll take any medication

other

than anti acid stuff? i was wondering if anyone found success -even for a

short

time with anything at all? i was thinking about meds that help with nerves

or

something.. i have been on a throw up binge for almost a week now and very

tired. carbonated seems to work better than anything for me. small sips .

takes

all day to drink a 16 oz one.i worry about gtting dehydrated.. although

last

week i was better than this. Does it sort of come and go? of maybe just

get

worse in times? i ate 3 tiny potatos yesterday. and 2 weiners the day

before. i

tried a bite of smoked sausage and it didnt work, i think it was to

grainy, you

know how sausage has those tiny ball like peices of meat in it? i wasnt

too

overweight.. just some, i have lost a lot. Do any of you all have trouble

keeping weight on? i have been concerned about that. there is no doctor

that i

have found that is very experienced in A around here. they do the same we

do,

and read on the web( at least that is what i think). YOU do Not know how

relieved i was to find thi group. i feel so alone. .. thank you so very

very

much, and i am Kim .. in Louisiana

[Non-text portions of this message have been removed]

[Non-text portions of this message have been removed]

[Guest guest]

My son has always thrown up a lot as a child and as an adult. The doctor

felt like it was best not to wrap him and take acid meds. Thanks is

correct. I just wanted to know someone else who was like him. Seems everyone

has the wrap so it made me worry I did not do the right thing. Problems

either way though.

In a message dated 5/10/2011 8:46:47 P.M. Central Daylight Time,

sharon_cline@... writes:

To ,

Thanks, I think. It was not my option not to do the wrap. I had problems

breathing in the OR, so they finished in a hurry so they could stable me.

Everything has turned out fine. The major thing I deal with is a lot of

Acid. I certainly hope that Cullen does not have that much trouble.

Sharon Cline

From: Montoya <__medhelpinfo@..._

(mailto:_medhelpinfo@...) _ (mailto:_medhelpinfo@..._

(mailto:medhelpinfo@...) )

>

Subject: Re: new to group

__achalasia _ (mailto:_achalasia ) _

(mailto:_achalasia _ (mailto:achalasia ) )

Date: Tuesday, May 10, 2011, 6:21 PM

Hello Kim and Welcome!

Most of us that have achalasia find ourselves at exactly this same point

as

you. I struggled for years! I can tell you that they tried SO many

different

medications to help, but none really worked for very long, most had bad

side

effects. I think having good days or good weeks and then finding yourself

in a

really bad week is how it goes. I actually got to the point that I wasn't

having any good days! You must educate yourself about this disease. It

will

not go away, it just seems to worsen over time.

From everything that I have read, there are usually 3 options that can

work.

There is balloon dilitation, which is usually helpful and can last on

average a

couple of years (more for some and less for others), then there is botox

(unless

you are old, this should not be considered because it can ruin your

chances of

having a successful surgery in the future). There is sugery, which is a

Heller

Myotomy, with fundoplication ( I had a Dor). The ballon or the surgery

are the

best options for most. In any case, you must make sure that the doctors

that

work with you are the BEST of the BEST with achalasia. There are hackers

out

there that can really mess you up. In this group, we have people that can

recommend a good top doctor.

I can tell you, I had achalasia for 22yrs, and I was so sick of living my

life

in torture. I found this group in 2004, I began learning about achalasia

and

received help in finding a great surgeon. Last year, I finally did it, I

had

the surgery. It's crazy that it took so long to find help, but now I can

eat

and not regurg food all day long! I am doing very well with swallowing

for

almost a year now. I have no regrets.

Please feel free to contact any of us and please think of what you can do

to get

some help?? We are here to help you.

Best regards, Julee SoCalif.

________________________________

From: kimellenbailey <__kimellenbailey@..._

(mailto:_kimellenbailey@...) _

(mailto:_kimellenbailey@..._ (mailto:kimellenbailey@...) ) >

__achalasia _ (mailto:_achalasia ) _

(mailto:_achalasia _ (mailto:achalasia ) )

Sent: Tue, May 10, 2011 5:34:54 AM

Subject: new to group

hello. i am new to the group . last year after much trouble.. thinking i

had a

stricture,they went in to see and dialate and i found that i had A. All

this is

such a revolting turn of events. i have become the thing that i find

repulsive.

throwing up into a cup when i am on errands. who would have ever thought i

would

need a salvia cup.and one by the bed as sometimes i get so tired running

back to

the potty to let salavia drain out... i am embarrassed at my self.i found

that i

cannot have my favorite food, salad, can do grilled fish and sometimes

chicken

if i chew if to pulp and learned to eat very slowly. i talked to sandy

about

this and she was so kind to respond. Do any of ya'll take any medication

other

than anti acid stuff? i was wondering if anyone found success -even for a

short

time with anything at all? i was thinking about meds that help with nerves

or

something.. i have been on a throw up binge for almost a week now and very

tired. carbonated seems to work better than anything for me. small sips .

takes

all day to drink a 16 oz one.i worry about gtting dehydrated.. although

last

week i was better than this. Does it sort of come and go? of maybe just

get

worse in times? i ate 3 tiny potatos yesterday. and 2 weiners the day

before. i

tried a bite of smoked sausage and it didnt work, i think it was to

grainy, you

know how sausage has those tiny ball like peices of meat in it? i wasnt

too

overweight.. just some, i have lost a lot. Do any of you all have trouble

keeping weight on? i have been concerned about that. there is no doctor

that i

have found that is very experienced in A around here. they do the same we

do,

and read on the web( at least that is what i think). YOU do Not know how

relieved i was to find thi group. i feel so alone. .. thank you so very

very

much, and i am Kim .. in Louisiana

[Non-text portions of this message have been removed]

[Non-text portions of this message have been removed]

[Non-text portions of this message have been removed]

[Non-text portions of this message have been removed]

[Guest guest]

Hello Kim and Welcome!

Most of us that have achalasia find ourselves at exactly this same point as

you.  I struggled for years!  I can tell you that they tried SO many different

medications to help, but none really worked for very long, most had bad side

effects.  I think having good days or good weeks and then finding yourself in a

really bad week is how it goes.  I actually got to the point that I wasn't

having any good days!  You must educate yourself about this disease.  It will

not go away, it just seems to worsen over time. 

From everything that I have read, there are usually 3 options that can work. 

There is balloon dilitation, which is usually helpful and can last on average a

couple of years (more for some and less for others), then there is botox (unless

you are old, this should not be considered because it can ruin your chances of

having a successful surgery in the future).  There is sugery, which is a Heller

Myotomy, with fundoplication ( I had a Dor).  The ballon or the surgery are the

best options for most.  In any case, you must make sure that the doctors that

work with you are the BEST of the BEST with achalasia.  There are hackers out

there that can really mess you up.  In this group, we have people that can

recommend a good top doctor. 

I can tell you, I had achalasia for 22yrs, and I was so sick of living my life

in torture.  I found this group in 2004, I began learning about achalasia and

received help in finding a great surgeon.  Last year, I finally did it, I had

the surgery.  It's crazy that it took so long to find help, but now I can eat

and not regurg food all day long!  I am doing very well with swallowing for

almost a year now.  I have no regrets.

Please feel free to contact any of us and please think of what you can do to get

some help?? We are here to help you. 

Best regards, Julee SoCalif.

 

________________________________

From: kimellenbailey <kimellenbailey@...>

achalasia

Sent: Tue, May 10, 2011 5:34:54 AM

Subject: new to group

 

hello. i am new to the group . last year after much trouble.. thinking i had a

stricture,they went in to see and dialate and i found that i had A. All this is

such a revolting turn of events. i have become the thing that i find repulsive.

throwing up into a cup when i am on errands. who would have ever thought i would

need a salvia cup.and one by the bed as sometimes i get so tired running back to

the potty to let salavia drain out... i am embarrassed at my self.i found that i

cannot have my favorite food, salad, can do grilled fish and sometimes chicken

if i chew if to pulp and learned to eat very slowly. i talked to sandy about

this and she was so kind to respond. Do any of ya'll take any medication other

than anti acid stuff? i was wondering if anyone found success -even for a short

time with anything at all? i was thinking about meds that help with nerves or

something.. i have been on a throw up binge for almost a week now and very

tired. carbonated seems to work better than anything for me. small sips . takes

all day to drink a 16 oz one.i worry about gtting dehydrated.. although last

week i was better than this. Does it sort of come and go? of maybe just get

worse in times? i ate 3 tiny potatos yesterday. and 2 weiners the day before. i

tried a bite of smoked sausage and it didnt work, i think it was to grainy, you

know how sausage has those tiny ball like peices of meat in it? i wasnt too

overweight.. just some, i have lost a lot. Do any of you all have trouble

keeping weight on? i have been concerned about that. there is no doctor that i

have found that is very experienced in A around here. they do the same we do,

and read on the web( at least that is what i think). YOU do Not know how

relieved i was to find thi group. i feel so alone. .. thank you so very very

much, and i am Kim .. in Louisiana

[Guest guest]

To Kim:

How close to Houston are you?  I live in Pasadena and I will not loose my

doctor, he has done numerous balloon dilitations for me.  I have had A for 34 +

years.  I take Donnatol (1 to 6 every day)  for the lower E spasms. Zegrid

Extended Relief (1 times daily) and Tagamet (800 mg) 3 times daily for the acid

and Buspar (10 mg 3 times daily I also see a pain control for pain

medication.  I have had the Heller Myotomy without the fundoplication.   I

have learned to take a deep breath and push and get food down most of the

time.  I never sleep flat, I am always elevated.  Keep the head at least 8

inches above the feet when lying down (is what I have been told).  I was taking

Procardia for the spasms in the upper E, but had to stop taking due to the

elevation in heart rate.  But it did work.  I have been told to eat 6 or more

small meals aday and to stay upright for at least 2 - 3 hours before going to

bed.  I also have a GI Cocktail (a

mixture that will deaden as I drink it), this is my last option as I hate

taking it.  I had my first balloon dilitation in May of 1979 and my Myotomy in

March of 1999.  Before the Myotomy I could not eat anything cold as that would

start the spasms to the extreme.  I traded this when I had the surgery to not

being able to eat bread.  I suppliment my intake of bread with corn and

popcorn.  Since this seems to be a nerve degenerative thing, I also take

B-Complex and B-12 and that seems to help as the B vitamins work to keep the

nervous system healthy.  

 

The one thing I have found from all the reading is that every person is

different and the disease will treat each person different in some manner. 

 

I also suggest that you find a good doctor that knows about the disease. 

 

Best Regards,

Sharon Cline  

 

From: Montoya <medhelpinfo@...>

Subject: Re: new to group

achalasia

Date: Tuesday, May 10, 2011, 6:21 PM

 

Hello Kim and Welcome!

Most of us that have achalasia find ourselves at exactly this same point as

you.  I struggled for years!  I can tell you that they tried SO many different

medications to help, but none really worked for very long, most had bad side

effects.  I think having good days or good weeks and then finding yourself in a

really bad week is how it goes.  I actually got to the point that I wasn't

having any good days!  You must educate yourself about this disease.  It will

not go away, it just seems to worsen over time. 

From everything that I have read, there are usually 3 options that can work. 

There is balloon dilitation, which is usually helpful and can last on average a

couple of years (more for some and less for others), then there is botox (unless

you are old, this should not be considered because it can ruin your chances of

having a successful surgery in the future).  There is sugery, which is a Heller

Myotomy, with fundoplication ( I had a Dor).  The ballon or the surgery are the

best options for most.  In any case, you must make sure that the doctors that

work with you are the BEST of the BEST with achalasia.  There are hackers out

there that can really mess you up.  In this group, we have people that can

recommend a good top doctor. 

I can tell you, I had achalasia for 22yrs, and I was so sick of living my life

in torture.  I found this group in 2004, I began learning about achalasia and

received help in finding a great surgeon.  Last year, I finally did it, I had

the surgery.  It's crazy that it took so long to find help, but now I can eat

and not regurg food all day long!  I am doing very well with swallowing for

almost a year now.  I have no regrets.

Please feel free to contact any of us and please think of what you can do to get

some help?? We are here to help you. 

Best regards, Julee SoCalif.

 

________________________________

From: kimellenbailey <kimellenbailey@...>

achalasia

Sent: Tue, May 10, 2011 5:34:54 AM

Subject: new to group

 

hello. i am new to the group . last year after much trouble.. thinking i had a

stricture,they went in to see and dialate and i found that i had A. All this is

such a revolting turn of events. i have become the thing that i find repulsive.

throwing up into a cup when i am on errands. who would have ever thought i would

need a salvia cup.and one by the bed as sometimes i get so tired running back to

the potty to let salavia drain out... i am embarrassed at my self.i found that i

cannot have my favorite food, salad, can do grilled fish and sometimes chicken

if i chew if to pulp and learned to eat very slowly. i talked to sandy about

this and she was so kind to respond. Do any of ya'll take any medication other

than anti acid stuff? i was wondering if anyone found success -even for a short

time with anything at all? i was thinking about meds that help with nerves or

something.. i have been on a throw up binge for almost a week now and very

tired. carbonated seems to work better than anything for me. small sips . takes

all day to drink a 16 oz one.i worry about gtting dehydrated.. although last

week i was better than this. Does it sort of come and go? of maybe just get

worse in times? i ate 3 tiny potatos yesterday. and 2 weiners the day before. i

tried a bite of smoked sausage and it didnt work, i think it was to grainy, you

know how sausage has those tiny ball like peices of meat in it? i wasnt too

overweight.. just some, i have lost a lot. Do any of you all have trouble

keeping weight on? i have been concerned about that. there is no doctor that i

have found that is very experienced in A around here. they do the same we do,

and read on the web( at least that is what i think). YOU do Not know how

relieved i was to find thi group. i feel so alone. .. thank you so very very

much, and i am Kim .. in Louisiana

[Guest guest]

To ,

Thanks, I think.  It was not my option not to do the wrap.  I had problems

breathing in the OR, so they finished in a hurry so they could stable me. 

Everything has turned out fine.  The major thing I deal with is a lot of

Acid.  I certainly hope that Cullen does not have that much trouble. 

 

Sharon Cline

From: Montoya <_medhelpinfo@..._ (mailto:medhelpinfo@...)

>

Subject: Re: new to group

_achalasia _ (mailto:achalasia )

Date: Tuesday, May 10, 2011, 6:21 PM

Hello Kim and Welcome!

Most of us that have achalasia find ourselves at exactly this same point

as

you. I struggled for years! I can tell you that they tried SO many

different

medications to help, but none really worked for very long, most had bad

side

effects. I think having good days or good weeks and then finding yourself

in a

really bad week is how it goes. I actually got to the point that I wasn't

having any good days! You must educate yourself about this disease. It

will

not go away, it just seems to worsen over time.

From everything that I have read, there are usually 3 options that can

work.

There is balloon dilitation, which is usually helpful and can last on

average a

couple of years (more for some and less for others), then there is botox

(unless

you are old, this should not be considered because it can ruin your

chances of

having a successful surgery in the future). There is sugery, which is a

Heller

Myotomy, with fundoplication ( I had a Dor). The ballon or the surgery

are the

best options for most. In any case, you must make sure that the doctors

that

work with you are the BEST of the BEST with achalasia. There are hackers

out

there that can really mess you up. In this group, we have people that can

recommend a good top doctor.

I can tell you, I had achalasia for 22yrs, and I was so sick of living my

life

in torture. I found this group in 2004, I began learning about achalasia

and

received help in finding a great surgeon. Last year, I finally did it, I

had

the surgery. It's crazy that it took so long to find help, but now I can

eat

and not regurg food all day long! I am doing very well with swallowing

for

almost a year now. I have no regrets.

Please feel free to contact any of us and please think of what you can do

to get

some help?? We are here to help you.

Best regards, Julee SoCalif.

________________________________

From: kimellenbailey <_kimellenbailey@..._

(mailto:kimellenbailey@...) >

_achalasia _ (mailto:achalasia )

Sent: Tue, May 10, 2011 5:34:54 AM

Subject: new to group

hello. i am new to the group . last year after much trouble.. thinking i

had a

stricture,they went in to see and dialate and i found that i had A. All

this is

such a revolting turn of events. i have become the thing that i find

repulsive.

throwing up into a cup when i am on errands. who would have ever thought i

would

need a salvia cup.and one by the bed as sometimes i get so tired running

back to

the potty to let salavia drain out... i am embarrassed at my self.i found

that i

cannot have my favorite food, salad, can do grilled fish and sometimes

chicken

if i chew if to pulp and learned to eat very slowly. i talked to sandy

about

this and she was so kind to respond. Do any of ya'll take any medication

other

than anti acid stuff? i was wondering if anyone found success -even for a

short

time with anything at all? i was thinking about meds that help with nerves

or

something.. i have been on a throw up binge for almost a week now and very

tired. carbonated seems to work better than anything for me. small sips .

takes

all day to drink a 16 oz one.i worry about gtting dehydrated.. although

last

week i was better than this. Does it sort of come and go? of maybe just

get

worse in times? i ate 3 tiny potatos yesterday. and 2 weiners the day

before. i

tried a bite of smoked sausage and it didnt work, i think it was to

grainy, you

know how sausage has those tiny ball like peices of meat in it? i wasnt

too

overweight.. just some, i have lost a lot. Do any of you all have trouble

keeping weight on? i have been concerned about that. there is no doctor

that i

have found that is very experienced in A around here. they do the same we

do,

and read on the web( at least that is what i think). YOU do Not know how

relieved i was to find thi group. i feel so alone. .. thank you so very

very

much, and i am Kim .. in Louisiana

[Guest guest]

hey - the VATS people, Sandy, Deborah (I think) maybe a few others -

dont' get wraps either - it's not that unusual

>

> From: Montoya <_medhelpinfo@..._ (mailto:medhelpinfo@...)

> >

> Subject: Re: new to group

> _achalasia _ (mailto:achalasia )

> Date: Tuesday, May 10, 2011, 6:21 PM

>

>

>

> Hello Kim and Welcome!

>

> Most of us that have achalasia find ourselves at exactly this same point

> as

> you. I struggled for years! I can tell you that they tried SO many

> different

> medications to help, but none really worked for very long, most had bad

> side

> effects. I think having good days or good weeks and then finding yourself

> in a

> really bad week is how it goes. I actually got to the point that I wasn't

> having any good days! You must educate yourself about this disease. It

> will

> not go away, it just seems to worsen over time.

>

> From everything that I have read, there are usually 3 options that can

> work.

> There is balloon dilitation, which is usually helpful and can last on

> average a

> couple of years (more for some and less for others), then there is botox

> (unless

> you are old, this should not be considered because it can ruin your

> chances of

> having a successful surgery in the future). There is sugery, which is a

> Heller

> Myotomy, with fundoplication ( I had a Dor). The ballon or the surgery

> are the

> best options for most. In any case, you must make sure that the doctors

> that

> work with you are the BEST of the BEST with achalasia. There are hackers

> out

> there that can really mess you up. In this group, we have people that can

>

> recommend a good top doctor.

>

> I can tell you, I had achalasia for 22yrs, and I was so sick of living my

> life

> in torture. I found this group in 2004, I began learning about achalasia

> and

> received help in finding a great surgeon. Last year, I finally did it, I

> had

> the surgery. It's crazy that it took so long to find help, but now I can

> eat

> and not regurg food all day long! I am doing very well with swallowing

> for

> almost a year now. I have no regrets.

>

> Please feel free to contact any of us and please think of what you can do

> to get

> some help?? We are here to help you.

>

> Best regards, Julee SoCalif.

>

>

>

> ________________________________

> From: kimellenbailey <_kimellenbailey@..._

> (mailto:kimellenbailey@...) >

> _achalasia _ (mailto:achalasia )

> Sent: Tue, May 10, 2011 5:34:54 AM

> Subject: new to group

>

>

> hello. i am new to the group . last year after much trouble.. thinking i

> had a

> stricture,they went in to see and dialate and i found that i had A. All

> this is

> such a revolting turn of events. i have become the thing that i find

> repulsive.

> throwing up into a cup when i am on errands. who would have ever thought i

> would

> need a salvia cup.and one by the bed as sometimes i get so tired running

> back to

> the potty to let salavia drain out... i am embarrassed at my self.i found

> that i

> cannot have my favorite food, salad, can do grilled fish and sometimes

> chicken

> if i chew if to pulp and learned to eat very slowly. i talked to sandy

> about

> this and she was so kind to respond. Do any of ya'll take any medication

> other

> than anti acid stuff? i was wondering if anyone found success -even for a

> short

> time with anything at all? i was thinking about meds that help with nerves

> or

> something.. i have been on a throw up binge for almost a week now and very

> tired. carbonated seems to work better than anything for me. small sips .

> takes

> all day to drink a 16 oz one.i worry about gtting dehydrated.. although

> last

> week i was better than this. Does it sort of come and go? of maybe just

> get

> worse in times? i ate 3 tiny potatos yesterday. and 2 weiners the day

> before. i

> tried a bite of smoked sausage and it didnt work, i think it was to

> grainy, you

> know how sausage has those tiny ball like peices of meat in it? i wasnt

> too

> overweight.. just some, i have lost a lot. Do any of you all have trouble

> keeping weight on? i have been concerned about that. there is no doctor

> that i

> have found that is very experienced in A around here. they do the same we

> do,

> and read on the web( at least that is what i think). YOU do Not know how

> relieved i was to find thi group. i feel so alone. .. thank you so very

> very

> much, and i am Kim .. in Louisiana

>

> [Non-text portions of this message have been removed]

>

> [Non-text portions of this message have been removed]

>

>

>

>

>

>

[Guest guest]

I never had a wrap either, so you're not alone

kim in canada

________________________________

From: zlmmom1 <mcnairmichelle@...>

achalasia

Sent: Wednesday, May 11, 2011 9:12 AM

Subject: Re: new to group

 

hey - the VATS people, Sandy, Deborah (I think) maybe a few others -

dont' get wraps either - it's not that unusual

>

> From: Montoya <_medhelpinfo@..._ (mailto:medhelpinfo@...)

> >

> Subject: Re: new to group

> _achalasia _ (mailto:achalasia )

> Date: Tuesday, May 10, 2011, 6:21 PM

>

>

>

> Hello Kim and Welcome!

>

> Most of us that have achalasia find ourselves at exactly this same point

> as

> you. I struggled for years! I can tell you that they tried SO many

> different

> medications to help, but none really worked for very long, most had bad

> side

> effects. I think having good days or good weeks and then finding yourself

> in a

> really bad week is how it goes. I actually got to the point that I wasn't

> having any good days! You must educate yourself about this disease. It

> will

> not go away, it just seems to worsen over time.

>

> From everything that I have read, there are usually 3 options that can

> work.

> There is balloon dilitation, which is usually helpful and can last on

> average a

> couple of years (more for some and less for others), then there is botox

> (unless

> you are old, this should not be considered because it can ruin your

> chances of

> having a successful surgery in the future). There is sugery, which is a

> Heller

> Myotomy, with fundoplication ( I had a Dor). The ballon or the surgery

> are the

> best options for most. In any case, you must make sure that the doctors

> that

> work with you are the BEST of the BEST with achalasia. There are hackers

> out

> there that can really mess you up. In this group, we have people that can

>

> recommend a good top doctor.

>

> I can tell you, I had achalasia for 22yrs, and I was so sick of living my

> life

> in torture. I found this group in 2004, I began learning about achalasia

> and

> received help in finding a great surgeon. Last year, I finally did it, I

> had

> the surgery. It's crazy that it took so long to find help, but now I can

> eat

> and not regurg food all day long! I am doing very well with swallowing

> for

> almost a year now. I have no regrets.

>

> Please feel free to contact any of us and please think of what you can do

> to get

> some help?? We are here to help you.

>

> Best regards, Julee SoCalif.

>

>

>

> ________________________________

> From: kimellenbailey <_kimellenbailey@..._

> (mailto:kimellenbailey@...) >

> _achalasia _ (mailto:achalasia )

> Sent: Tue, May 10, 2011 5:34:54 AM

> Subject: new to group

>

>

> hello. i am new to the group . last year after much trouble.. thinking i

> had a

> stricture,they went in to see and dialate and i found that i had A. All

> this is

> such a revolting turn of events. i have become the thing that i find

> repulsive.

> throwing up into a cup when i am on errands. who would have ever thought i

> would

> need a salvia cup.and one by the bed as sometimes i get so tired running

> back to

> the potty to let salavia drain out... i am embarrassed at my self.i found

> that i

> cannot have my favorite food, salad, can do grilled fish and sometimes

> chicken

> if i chew if to pulp and learned to eat very slowly. i talked to sandy

> about

> this and she was so kind to respond. Do any of ya'll take any medication

> other

> than anti acid stuff? i was wondering if anyone found success -even for a

> short

> time with anything at all? i was thinking about meds that help with nerves

> or

> something.. i have been on a throw up binge for almost a week now and very

> tired. carbonated seems to work better than anything for me. small sips .

> takes

> all day to drink a 16 oz one.i worry about gtting dehydrated.. although

> last

> week i was better than this. Does it sort of come and go? of maybe just

> get

> worse in times? i ate 3 tiny potatos yesterday. and 2 weiners the day

> before. i

> tried a bite of smoked sausage and it didnt work, i think it was to

> grainy, you

> know how sausage has those tiny ball like peices of meat in it? i wasnt

> too

> overweight.. just some, i have lost a lot. Do any of you all have trouble

> keeping weight on? i have been concerned about that. there is no doctor

> that i

> have found that is very experienced in A around here. they do the same we

> do,

> and read on the web( at least that is what i think). YOU do Not know how

> relieved i was to find thi group. i feel so alone. .. thank you so very

> very

> much, and i am Kim .. in Louisiana

>

> [Non-text portions of this message have been removed]

>

> [Non-text portions of this message have been removed]

>

>

>

>

>

>

[Guest guest]

I did have a Hellers and a Dors Fundiplication/wrap May 2009. I have been

plagued with heartburn/GERD/Haital Hernia since the first day of my first

pregnancy 49 years ago and did what I could...Tums, Prilosec, Aciphex, etc.

My E was at a stage just before Barret's. The wrap was a miracle for

me...not a single moment of heartburn since then!!! Dr claimed he fixed the

hernia along with the wrap.

I still have troubles getting food down. I seem to have a huge amount of

foam, lower capacity for food tho I am hungry all the time. Food seems to

stick on the foam or air til I clean out the foam or can burp without

bringing the stuffed E contents up. Takes ages to go thru a meal.

I love hearing about other Achalasians solutions to diet and h ow they

handle their individual quirks and problems. Keep em coming.

It's a really big deal that I have no heartburn!

in Santa Barbara

In a message dated 5/11/2011 1:02:49 P.M. Pacific Daylight Time,

marcenerainey@... writes:

I didn't have a wrap...VATS Heller Myotomy in April 2011...so far so good!

Marci

On Wed, May 11, 2011 at 6:29 AM, Kim <kimmydawn42@...> wrote:

>

>

> I never had a wrap either, so you're not alone

>

> kim in canada

>

> ________________________________

> From: zlmmom1 <mcnairmichelle@...>

> achalasia

> Sent: Wednesday, May 11, 2011 9:12 AM

> Subject: Re: new to group

>

>

>

> hey - the VATS people, Sandy, Deborah (I think) maybe a few

others

> - dont' get wraps either - it's not that unusual

>

>

> >

> > From: Montoya <_medhelpinfo@..._ (mailto:medhelpinfo@...)

> > >

> > Subject: Re: new to group

> > _achalasia _ (mailto:achalasia )

> > Date: Tuesday, May 10, 2011, 6:21 PM

> >

> >

> >

> > Hello Kim and Welcome!

> >

> > Most of us that have achalasia find ourselves at exactly this same

point

> > as

> > you. I struggled for years! I can tell you that they tried SO many

> > different

> > medications to help, but none really worked for very long, most had bad

> > side

> > effects. I think having good days or good weeks and then finding

yourself

>

> > in a

> > really bad week is how it goes. I actually got to the point that I

wasn't

>

> > having any good days! You must educate yourself about this disease. It

> > will

> > not go away, it just seems to worsen over time.

> >

> > From everything that I have read, there are usually 3 options that can

> > work.

> > There is balloon dilitation, which is usually helpful and can last on

> > average a

> > couple of years (more for some and less for others), then there is

botox

> > (unless

> > you are old, this should not be considered because it can ruin your

> > chances of

> > having a successful surgery in the future). There is sugery, which is a

> > Heller

> > Myotomy, with fundoplication ( I had a Dor). The ballon or the surgery

> > are the

> > best options for most. In any case, you must make sure that the doctors

> > that

> > work with you are the BEST of the BEST with achalasia. There are

hackers

> > out

> > there that can really mess you up. In this group, we have people that

can

>

> >

> > recommend a good top doctor.

> >

> > I can tell you, I had achalasia for 22yrs, and I was so sick of living

my

>

> > life

> > in torture. I found this group in 2004, I began learning about

achalasia

> > and

> > received help in finding a great surgeon. Last year, I finally did it,

I

> > had

> > the surgery. It's crazy that it took so long to find help, but now I

can

> > eat

> > and not regurg food all day long! I am doing very well with swallowing

> > for

> > almost a year now. I have no regrets.

> >

> > Please feel free to contact any of us and please think of what you can

do

>

> > to get

> > some help?? We are here to help you.

> >

> > Best regards, Julee SoCalif.

> >

> >

> >

> > ________________________________

> > From: kimellenbailey <_kimellenbailey@..._

> > (mailto:kimellenbailey@...) >

> > _achalasia _ (mailto:achalasia )

> > Sent: Tue, May 10, 2011 5:34:54 AM

> > Subject: new to group

> >

> >

> > hello. i am new to the group . last year after much trouble.. thinking

i

> > had a

> > stricture,they went in to see and dialate and i found that i had A. All

> > this is

> > such a revolting turn of events. i have become the thing that i find

> > repulsive.

> > throwing up into a cup when i am on errands. who would have ever

thought

> i

> > would

> > need a salvia cup.and one by the bed as sometimes i get so tired

running

> > back to

> > the potty to let salavia drain out... i am embarrassed at my self.i

found

>

> > that i

> > cannot have my favorite food, salad, can do grilled fish and sometimes

> > chicken

> > if i chew if to pulp and learned to eat very slowly. i talked to sandy

> > about

> > this and she was so kind to respond. Do any of ya'll take any

medication

> > other

> > than anti acid stuff? i was wondering if anyone found success -even

for a

>

> > short

> > time with anything at all? i was thinking about meds that help with

> nerves

> > or

> > something.. i have been on a throw up binge for almost a week now and

> very

> > tired. carbonated seems to work better than anything for me. small

sips .

>

> > takes

> > all day to drink a 16 oz one.i worry about gtting dehydrated.. although

> > last

> > week i was better than this. Does it sort of come and go? of maybe just

> > get

> > worse in times? i ate 3 tiny potatos yesterday. and 2 weiners the day

> > before. i

> > tried a bite of smoked sausage and it didnt work, i think it was to

> > grainy, you

> > know how sausage has those tiny ball like peices of meat in it? i wasnt

> > too

> > overweight.. just some, i have lost a lot. Do any of you all have

trouble

>

> > keeping weight on? i have been concerned about that. there is no doctor

> > that i

> > have found that is very experienced in A around here. they do the same

we

>

> > do,

> > and read on the web( at least that is what i think). YOU do Not know

how

> > relieved i was to find thi group. i feel so alone. .. thank you so very

> > very

> > much, and i am Kim .. in Louisiana

> >

> >

[Guest guest]

I didn't have a wrap...VATS Heller Myotomy in April 2011...so far so good!

Marci

On Wed, May 11, 2011 at 6:29 AM, Kim <kimmydawn42@...> wrote:

>

>

> I never had a wrap either, so you're not alone

>

> kim in canada

>

> ________________________________

> From: zlmmom1 <mcnairmichelle@...>

> achalasia

> Sent: Wednesday, May 11, 2011 9:12 AM

> Subject: Re: new to group

>

>

>

> hey - the VATS people, Sandy, Deborah (I think) maybe a few others

> - dont' get wraps either - it's not that unusual

>

>

> >

> > From: Montoya <_medhelpinfo@..._ (mailto:medhelpinfo@...)

> > >

> > Subject: Re: new to group

> > _achalasia _ (mailto:achalasia )

> > Date: Tuesday, May 10, 2011, 6:21 PM

> >

> >

> >

> > Hello Kim and Welcome!

> >

> > Most of us that have achalasia find ourselves at exactly this same point

> > as

> > you. I struggled for years! I can tell you that they tried SO many

> > different

> > medications to help, but none really worked for very long, most had bad

> > side

> > effects. I think having good days or good weeks and then finding yourself

>

> > in a

> > really bad week is how it goes. I actually got to the point that I wasn't

>

> > having any good days! You must educate yourself about this disease. It

> > will

> > not go away, it just seems to worsen over time.

> >

> > From everything that I have read, there are usually 3 options that can

> > work.

> > There is balloon dilitation, which is usually helpful and can last on

> > average a

> > couple of years (more for some and less for others), then there is botox

> > (unless

> > you are old, this should not be considered because it can ruin your

> > chances of

> > having a successful surgery in the future). There is sugery, which is a

> > Heller

> > Myotomy, with fundoplication ( I had a Dor). The ballon or the surgery

> > are the

> > best options for most. In any case, you must make sure that the doctors

> > that

> > work with you are the BEST of the BEST with achalasia. There are hackers

> > out

> > there that can really mess you up. In this group, we have people that can

>

> >

> > recommend a good top doctor.

> >

> > I can tell you, I had achalasia for 22yrs, and I was so sick of living my

>

> > life

> > in torture. I found this group in 2004, I began learning about achalasia

> > and

> > received help in finding a great surgeon. Last year, I finally did it, I

> > had

> > the surgery. It's crazy that it took so long to find help, but now I can

> > eat

> > and not regurg food all day long! I am doing very well with swallowing

> > for

> > almost a year now. I have no regrets.

> >

> > Please feel free to contact any of us and please think of what you can do

>

> > to get

> > some help?? We are here to help you.

> >

> > Best regards, Julee SoCalif.

> >

> >

> >

> > ________________________________

> > From: kimellenbailey <_kimellenbailey@..._

> > (mailto:kimellenbailey@...) >

> > _achalasia _ (mailto:achalasia )

> > Sent: Tue, May 10, 2011 5:34:54 AM

> > Subject: new to group

> >

> >

> > hello. i am new to the group . last year after much trouble.. thinking i

> > had a

> > stricture,they went in to see and dialate and i found that i had A. All

> > this is

> > such a revolting turn of events. i have become the thing that i find

> > repulsive.

> > throwing up into a cup when i am on errands. who would have ever thought

> i

> > would

> > need a salvia cup.and one by the bed as sometimes i get so tired running

> > back to

> > the potty to let salavia drain out... i am embarrassed at my self.i found

>

> > that i

> > cannot have my favorite food, salad, can do grilled fish and sometimes

> > chicken

> > if i chew if to pulp and learned to eat very slowly. i talked to sandy

> > about

> > this and she was so kind to respond. Do any of ya'll take any medication

> > other

> > than anti acid stuff? i was wondering if anyone found success -even for a

>

> > short

> > time with anything at all? i was thinking about meds that help with

> nerves

> > or

> > something.. i have been on a throw up binge for almost a week now and

> very

> > tired. carbonated seems to work better than anything for me. small sips .

>

> > takes

> > all day to drink a 16 oz one.i worry about gtting dehydrated.. although

> > last

> > week i was better than this. Does it sort of come and go? of maybe just

> > get

> > worse in times? i ate 3 tiny potatos yesterday. and 2 weiners the day

> > before. i

> > tried a bite of smoked sausage and it didnt work, i think it was to

> > grainy, you

> > know how sausage has those tiny ball like peices of meat in it? i wasnt

> > too

> > overweight.. just some, i have lost a lot. Do any of you all have trouble

>

> > keeping weight on? i have been concerned about that. there is no doctor

> > that i

> > have found that is very experienced in A around here. they do the same we

>

> > do,

> > and read on the web( at least that is what i think). YOU do Not know how

> > relieved i was to find thi group. i feel so alone. .. thank you so very

> > very

> > much, and i am Kim .. in Louisiana

> >

> >

[Guest guest]

Has he been tested for Celiac disease?

Linn

>

> i just joined this group and the few posts i have read, everyone seems to be

so knowledgable! I am very happy to be a part of this.

> my son has all symptoms of hyperthyriodism. hasnt gained weight or height

in over a year. also a food panel was done and he is reactive to everything.

along with his severe gut issues and autism he has autoimmune disfunction so all

that has me believe he may have graves.

> I am not a docter and am very unhappy at being forced to become one to save

my sons life.

> I wont go into it here but medical docters almost killed my son and yes even

tried to take him away when i refused thier treatment protocol.which made my son

very ill. long sad story. I found out that i knew my sons illness better then

the docters and knew how to heal him better then the docters. I am not saying

this with arrogance but with sadness. the last time i went to a docter and told

her my son has stopped growing again and am very concerned she just looked at me

with glazed eyes like i bored her and asked me about his diet.

> I have read about everything on nutrition available I have my son on the

highest calorie foods that he can handle/is not allergic to.

> i told her i suspected his thyroid and she told me well does he get cold a

lot? I was like no hyperthyroidism. sigh.

> anyway his symptoms are he has to eat non stop hungry all the time.heat

intolerant, never cold. hyperactive always. no weight gain despited eating all

the time. i havnt gotten the official blood tests because of the trauma

asociated with blood draws. i have been researching hyperthyroid cures and came

up with iodine as the number one treatment in the 1920s for graves..so here i

am. am also doing AC chelation with good results. enzymes probiotics vitamins

ect. ect.my posts are normally short but wanted to share my story. and hope for

any suggestions. my son started on five drops lugol iodine with really good

results in last two days seems to be sleeping better.

>

[Guest guest]

If he is hyperthyroid then Iodine, Selenium, L-Carnatine and Lithium will all work to slow the thyroid down.

Buist, ND

new to group

i just joined this group and the few posts i have read, everyone seems to be so knowledgable! I am very happy to be a part of this.my son has all symptoms of hyperthyriodism. hasnt gained weight or height in over a year. also a food panel was done and he is reactive to everything. along with his severe gut issues and autism he has autoimmune disfunction so all that has me believe he may have graves.I am not a docter and am very unhappy at being forced to become one to save my sons life.I wont go into it here but medical docters almost killed my son and yes even tried to take him away when i refused thier treatment protocol.which made my son very ill. long sad story. I found out that i knew my sons illness better then the docters and knew how to heal him better then the docters. I am not saying this with arrogance but with sadness. the last time i went to a docter and told her my son has stopped growing again and am very concerned she just looked at me with glazed eyes like i bored her and asked me about his diet.I have read about everything on nutrition available I have my son on the highest calorie foods that he can handle/is not allergic to.i told her i suspected his thyroid and she told me well does he get cold a lot? I was like no hyperthyroidism. sigh.anyway his symptoms are he has to eat non stop hungry all the time.heat intolerant, never cold. hyperactive always. no weight gain despited eating all the time. i havnt gotten the official blood tests because of the trauma asociated with blood draws. i have been researching hyperthyroid cures and came up with iodine as the number one treatment in the 1920s for graves..so here i am. am also doing AC chelation with good results. enzymes probiotics vitamins ect. ect.my posts are normally short but wanted to share my story. and hope for any suggestions. my son started on five drops lugol iodine with really good results in last two days seems to be sleeping better.

[Guest guest]

Many hypothyroid children are also underweight, & many autistic kids are underweight due to poor absorption, so unless you have done a lot of work on his gut, his low weight doesn't necessarily mean hyper. He could be eating all the time because he can't get the nutrients out of the food. (Is he a diarrhea kid? Some kids have the food go through so fast that it is undigested.) But whether he is hypo or hyper, it is possible that iodine will help. (Topical magnesium might be best, given that kids on the spectrum tend to have issues with absorbing nutrients through the gut. And you might want to work your way up to the high side on companion nutrients.)There was a link recently posted to a video on thyroid & autism, from a presenter at Autism One last month. His recommendation about iodine is wrong, but at least he is headed in the right general direction.I don't know where you are on the whole autism journey. Is he GF/CF/SF? (I am guessing that gluten, casein & soy are among his allergies, but it never hurts to check.)Recent posts would suggest that increasing HCL might help with nutrient absorption & reducing allergies. (At least it is something to check out if you are not doing it already.)Yes, you will definitely have to take charge of his health, because even the better DAN! docs do not always know as much as other moms. The best advice I have had all along has been from other moms. There are several of us autie moms on this list.AnneOn Jun 12, 2011, at 6:39 PM, cheryl wrote:

i just joined this group and the few posts i have read, everyone seems to be so knowledgable! I am very happy to be a part of this.

my son has all symptoms of hyperthyriodism. hasnt gained weight or height in over a year. also a food panel was done and he is reactive to everything. along with his severe gut issues and autism he has autoimmune disfunction so all that has me believe he may have graves.

I am not a docter and am very unhappy at being forced to become one to save my sons life.

I wont go into it here but medical docters almost killed my son and yes even tried to take him away when i refused thier treatment protocol.which made my son very ill. long sad story. I found out that i knew my sons illness better then the docters and knew how to heal him better then the docters. I am not saying this with arrogance but with sadness. the last time i went to a docter and told her my son has stopped growing again and am very concerned she just looked at me with glazed eyes like i bored her and asked me about his diet.

I have read about everything on nutrition available I have my son on the highest calorie foods that he can handle/is not allergic to.

i told her i suspected his thyroid and she told me well does he get cold a lot? I was like no hyperthyroidism. sigh.

anyway his symptoms are he has to eat non stop hungry all the time.heat intolerant, never cold. hyperactive always. no weight gain despited eating all the time. i havnt gotten the official blood tests because of the trauma asociated with blood draws. i have been researching hyperthyroid cures and came up with iodine as the number one treatment in the 1920s for graves..so here i am. am also doing AC chelation with good results. enzymes probiotics vitamins ect. ect.my posts are normally short but wanted to share my story. and hope for any suggestions. my son started on five drops lugol iodine with really good results in last two days seems to be sleeping better.

[Guest guest]

much info for the bio-med treatments for autism you can find in this book .also ldn that can help with auto-immune

 

Children With Starving Brains: A Medical Treatment Guide for Autism Spectrum Disorder, Second Edition

On Mon, Jun 13, 2011 at 8:32 AM, Anne Seals <anneseals@...> wrote:

 

Many hypothyroid children are also underweight, & many autistic kids are underweight due to poor absorption, so unless you have done a lot of work on his gut, his low weight doesn't necessarily mean hyper. He could be eating all the time because he can't get the nutrients out of the food. (Is he a diarrhea kid? Some kids have the food go through so fast that it is undigested.) But whether he is hypo or hyper, it is possible that iodine will help. (Topical magnesium might be best, given that kids on the spectrum tend to have issues with absorbing nutrients through the gut. And you might want to work your way up to the high side on companion nutrients.)

There was a link recently posted to a video on thyroid & autism, from a presenter at Autism One last month. His recommendation about iodine is wrong, but at least he is headed in the right general direction.

I don't know where you are on the whole autism journey. Is he GF/CF/SF? (I am guessing that gluten, casein & soy are among his allergies, but it never hurts to check.)

Recent posts would suggest that increasing HCL might help with nutrient absorption & reducing allergies. (At least it is something to check out if you are not doing it already.)

Yes, you will definitely have to take charge of his health, because even the better DAN! docs do not always know as much as other moms. The best advice I have had all along has been from other moms. There are several of us autie moms on this list.

Anne

On Jun 12, 2011, at 6:39 PM, cheryl wrote:

 

i just joined this group and the few posts i have read, everyone seems to be so knowledgable! I am very happy to be a part of this.my son has all symptoms of hyperthyriodism. hasnt gained weight or height in over a year. also a food panel was done and he is reactive to everything. along with his severe gut issues and autism he has autoimmune disfunction so all that has me believe he may have graves.

I am not a docter and am very unhappy at being forced to become one to save my sons life.I wont go into it here but medical docters almost killed my son and yes even tried to take him away when i refused thier treatment protocol.which made my son very ill. long sad story. I found out that i knew my sons illness better then the docters and knew how to heal him better then the docters. I am not saying this with arrogance but with sadness. the last time i went to a docter and told her my son has stopped growing again and am very concerned she just looked at me with glazed eyes like i bored her and asked me about his diet.

I have read about everything on nutrition available I have my son on the highest calorie foods that he can handle/is not allergic to.i told her i suspected his thyroid and she told me well does he get cold a lot? I was like no hyperthyroidism. sigh.

anyway his symptoms are he has to eat non stop hungry all the time.heat intolerant, never cold. hyperactive always. no weight gain despited eating all the time. i havnt gotten the official blood tests because of the trauma asociated with blood draws. i have been researching hyperthyroid cures and came up with iodine as the number one treatment in the 1920s for graves..so here i am. am also doing AC chelation with good results. enzymes probiotics vitamins ect. ect.my posts are normally short but wanted to share my story. and hope for any suggestions. my son started on five drops lugol iodine with really good results in last two days seems to be sleeping better.

[Guest guest]

I want to thank everyone who responded to my post. yes my son was horrible gut kid. I fought for years healing his gut. he never had a formed bowel movement till recently. he had malabsorbtion, leaky gut,it took a lot of work ..putting him on SCD diet he is GFCF as well havnt tried the HCL though may be something looking into thannks. he didnt test positive for celiac.

I came to suspect hyperthyriod because his gut is doing better for the first time in his life and still lack of growth, hyperactive rapid heartbeat andnon stop appetite also did parasite treatment.I have him on lithium he cant tolerate l carnitine and now the iodine. to early to say if it is helping him or not his skin test it disappeared couple hours after applying but i know that is not reliable for iodine deficiency. \

like everything in life must wait and see if he is a responder.I will also look into book kids with starving brains have heard lot bout that one.

thank you again glad to be on this journey with everyone here

From: Anne Seals <anneseals@...>iodine Sent: Mon, June 13, 2011 2:32:21 AMSubject: Re: new to group

Many hypothyroid children are also underweight, & many autistic kids are underweight due to poor absorption, so unless you have done a lot of work on his gut, his low weight doesn't necessarily mean hyper. He could be eating all the time because he can't get the nutrients out of the food. (Is he a diarrhea kid? Some kids have the food go through so fast that it is undigested.) But whether he is hypo or hyper, it is possible that iodine will help. (Topical magnesium might be best, given that kids on the spectrum tend to have issues with absorbing nutrients through the gut. And you might want to work your way up to the high side on companion nutrients.)

There was a link recently posted to a video on thyroid & autism, from a presenter at Autism One last month. His recommendation about iodine is wrong, but at least he is headed in the right general direction.

I don't know where you are on the whole autism journey. Is he GF/CF/SF? (I am guessing that gluten, casein & soy are among his allergies, but it never hurts to check.)

Recent posts would suggest that increasing HCL might help with nutrient absorption & reducing allergies. (At least it is something to check out if you are not doing it already.)

Yes, you will definitely have to take charge of his health, because even the better DAN! docs do not always know as much as other moms. The best advice I have had all along has been from other moms. There are several of us autie moms on this list.

Anne

On Jun 12, 2011, at 6:39 PM, cheryl wrote:

i just joined this group and the few posts i have read, everyone seems to be so knowledgable! I am very happy to be a part of this.my son has all symptoms of hyperthyriodism. hasnt gained weight or height in over a year. also a food panel was done and he is reactive to everything. along with his severe gut issues and autism he has autoimmune disfunction so all that has me believe he may have graves.I am not a docter and am very unhappy at being forced to become one to save my sons life.I wont go into it here but medical docters almost killed my son and yes even tried to take him away when i refused thier treatment protocol.which made my son very ill. long sad story. I found out that i knew my sons illness better then the docters and knew how to heal him better then the docters. I am not saying this with arrogance but with sadness. the last time i went to a docter and told her my son has stopped growing again and am very concerned she just

looked at me with glazed eyes like i bored her and asked me about his diet.I have read about everything on nutrition available I have my son on the highest calorie foods that he can handle/is not allergic to.i told her i suspected his thyroid and she told me well does he get cold a lot? I was like no hyperthyroidism. sigh.anyway his symptoms are he has to eat non stop hungry all the time.heat intolerant, never cold. hyperactive always. no weight gain despited eating all the time. i havnt gotten the official blood tests because of the trauma asociated with blood draws. i have been researching hyperthyroid cures and came up with iodine as the number one treatment in the 1920s for graves..so here i am. am also doing AC chelation with good results. enzymes probiotics vitamins ect. ect.my posts are normally short but wanted to share my story. and hope for any suggestions. my son started on five drops

lugol iodine with really good results in last two days seems to be sleeping better.

[Guest guest]

I have heard that the only sure way of testing for Celiac is by endoscopy and a biopsy of the mucosal membrane. I am celiac and the blood tests came out negative for me as well.

On Mon, Jun 13, 2011 at 8:58 AM, Channa Brennon <channabrennon@...> wrote:

 

I want to thank everyone who responded to my post. yes my son was horrible gut kid. I fought for years healing his gut. he never had a formed bowel movement till recently. he had malabsorbtion, leaky gut,it took a lot of work ..putting him on SCD diet  he is GFCF as well havnt tried the HCL though may be something looking into thannks.  he didnt test positive for celiac.

    I came to suspect hyperthyriod because his gut is doing better for the first time in his life and still lack of growth, hyperactive rapid heartbeat andnon stop appetite also did parasite treatment.I have him on lithium he cant tolerate l carnitine and now the iodine.  to early to say if it is helping him or not his skin test it disappeared couple hours after applying but i know that is not reliable for iodine deficiency. \

  like everything in life must wait and see if he is a responder.I will also look into book kids with starving brains have heard lot bout that one.

 thank you again  glad to be on this journey with everyone here

From: Anne Seals <anneseals@...>iodine

Sent: Mon, June 13, 2011 2:32:21 AMSubject: Re: new to group

 

Many hypothyroid children are also underweight, & many autistic kids are underweight due to poor absorption, so unless you have done a lot of work on his gut, his low weight doesn't necessarily mean hyper. He could be eating all the time because he can't get the nutrients out of the food. (Is he a diarrhea kid? Some kids have the food go through so fast that it is undigested.) But whether he is hypo or hyper, it is possible that iodine will help. (Topical magnesium might be best, given that kids on the spectrum tend to have issues with absorbing nutrients through the gut. And you might want to work your way up to the high side on companion nutrients.)

There was a link recently posted to a video on thyroid & autism, from a presenter at Autism One last month. His recommendation about iodine is wrong, but at least he is headed in the right general direction.

I don't know where you are on the whole autism journey. Is he GF/CF/SF? (I am guessing that gluten, casein & soy are among his allergies, but it never hurts to check.)

Recent posts would suggest that increasing HCL might help with nutrient absorption & reducing allergies. (At least it is something to check out if you are not doing it already.)

Yes, you will definitely have to take charge of his health, because even the better DAN! docs do not always know as much as other moms. The best advice I have had all along has been from other moms. There are several of us autie moms on this list.

Anne

On Jun 12, 2011, at 6:39 PM, cheryl wrote:

 

i just joined this group and the few posts i have read, everyone seems to be so knowledgable! I am very happy to be a part of this.my son has all symptoms of hyperthyriodism. hasnt gained weight or height in over a year. also a food panel was done and he is reactive to everything. along with his severe gut issues and autism he has autoimmune disfunction so all that has me believe he may have graves.

I am not a docter and am very unhappy at being forced to become one to save my sons life.I wont go into it here but medical docters almost killed my son and yes even tried to take him away when i refused thier treatment protocol.which made my son very ill. long sad story. I found out that i knew my sons illness better then the docters and knew how to heal him better then the docters. I am not saying this with arrogance but with sadness. the last time i went to a docter and told her my son has stopped growing again and am very concerned she just

looked at me with glazed eyes like i bored her and asked me about his diet.I have read about everything on nutrition available I have my son on the highest calorie foods that he can handle/is not allergic to.i told her i suspected his thyroid and she told me well does he get cold a lot? I was like no hyperthyroidism. sigh.

anyway his symptoms are he has to eat non stop hungry all the time.heat intolerant, never cold. hyperactive always. no weight gain despited eating all the time. i havnt gotten the official blood tests because of the trauma asociated with blood draws. i have been researching hyperthyroid cures and came up with iodine as the number one treatment in the 1920s for graves..so here i am. am also doing AC chelation with good results. enzymes probiotics vitamins ect. ect.my posts are normally short but wanted to share my story. and hope for any suggestions. my son started on five drops

lugol iodine with really good results in last two days seems to be sleeping better.

-- " I have come to believe that in the world there is nothing to explain the world. " Loren Eiseley