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Jill,

Hi and welcome. Wow does that all sound tough. How old is the person with

DS? I'm not sure that I got that. It is great that you were able to be

there for your brother and take off from your job. I hope it all works out

for you.

~ Mom to 10 1/2 DS and 6

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Hello Jill and welcome to the list , A very busy woman you are there, What a

great sister and Aunt you are , My name is Carolyn I live in Tennessee and have

a son Darran who is 18 and also DS. We have alot of wonderful parents and some

great stories from each and everyone , so feel free to ask questions and give us

brags, we are here for the good and the bad.

Carolyn

new here

Hi everyone.

Just a short bio:

This past August I began helping my brother with his DS son(his wife

passed away in March). He, Albert is 22 yrs old. He had tried

babysitters for before and after school. So I and my husband decided

that I would stop driving truck and help out my brother. This has

been a real challenge to get up to speed with what all he can do and

cannot do, health problems, ect. He is in a new school and is doing

quite well there. To top everything off my Mom had to go onto

dialysis 3 days a week , then Dad was told he could no longer drive.

So I now drive them everywhere they need to go.

Jill

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  • 3 months later...
Guest guest

Pierre,

I think your English is just fine. My grandfather has also been diagnosed

with Achalasia. I have done some research on the Internet (which is NO

guarantee that the info is medically supported) but I've found several

doctors that specialize in Achalasia. I plan on contacting a few of them. I

will share with you whom the doctors are:

Dr. Arnon Lambroza, Cornell Medical Center, The New York Hospital

215-517-7570

I am MOST impressed with him and his work related to this disease. Here are

the other docs I've stumbled across:

Dr. Rolle

Kaiser Foundation Hospital

Walnut Creek

Dr. Hunter

Emory University

Dr. Gene Chaio

IU Med Center

I want to say that you should be under a physicians care and not just

attempting to seek remedies on the web. I'm sure you know this. Anyway,

please " search " the names of the docs I've given you (because I know you'll

find their phone numbers) and call them. That's what I plan on doing in order

to help my grandpa.

Hope this helps.

Sincerely,

Staci

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Guest guest

Bonjour Pierre!

I hope that you remain lucky and that your achalasia does not get too

bad. I was diagnosed 12 months ago but had been suffereing for some

time prior to that and at that time my syptoms were similar to

yours. I'm not saying that yours will continue to get worse, from

what I have read everyone is different when it comes to this

disease.

I am now scheduled to have the operation within the next few months

but it took me a long time to reach that decision and I had a course

of botox injections 6 months ago. Perhaps you should discuss this

with your doctor but try not to rush into anything, all I can say is

have a good read of previous messages posted on this site. You have

to ask yourself if you are able to manage the way you are at the

moment? Hope all goes well sorry I could not reply in french, my

speaking is not too bad but my written french is terrible!

Jess

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Guest guest

I have another doctor to add to that list-- Dr. Dan Dempsey Temple

University-- he just performed the myotomy on my boyfriend, but I know that

he has turned down others for surgery, recommending less severe remedies.

Good luck!!

Re: new here

Pierre,

I think your English is just fine. My grandfather has also been diagnosed

with Achalasia. I have done some research on the Internet (which is NO

guarantee that the info is medically supported) but I've found several

doctors that specialize in Achalasia. I plan on contacting a few of them. I

will share with you whom the doctors are:

Dr. Arnon Lambroza, Cornell Medical Center, The New York Hospital

215-517-7570

I am MOST impressed with him and his work related to this disease. Here are

the other docs I've stumbled across:

Dr. Rolle

Kaiser Foundation Hospital

Walnut Creek

Dr. Hunter

Emory University

Dr. Gene Chaio

IU Med Center

I want to say that you should be under a physicians care and not just

attempting to seek remedies on the web. I'm sure you know this. Anyway,

please " search " the names of the docs I've given you (because I know you'll

find their phone numbers) and call them. That's what I plan on doing in

order

to help my grandpa.

Hope this helps.

Sincerely,

Staci

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Guest guest

Pierre--

Your English is vastly better than my French, so I'm sticking to English here!

If I were in your shoes, I'd read up on the EFFECTS of balloon dilatation

and myotomies.

If your basic problem is not a stricture, but rather aperistalsis, I'm not

sure that either of these two procedures are going to be exactly the right

treatment.

But perhaps I'm misreading this situtation. Has your doctor recommended

these treatments?

Best of luck,

Vicki

>Hello,I am a 36 years old male recently diagnosed with achalasia,the main

>problen here is taht in dont have all the complications of

>achalasia.Mysphinter relaxes normally with a low pressure (thats what my

>manometry showed)i had aperistalsis(no movement of the osephagus),but the

>barium swallow shower no dilated oesophagus ormegaoesopgaus,i have some

>times trouble with swallowing but it passes with water with no problem,i

>occasionlay feel that i have some water or liquid in my oesophagus but i had

>never had to resurgitate,this seems to get worse when i feel anxious,but

>never had to throw up.I wonder if you couls give me some advice on wheter to

>have aballon dilaton or surgery,after what i read in here seems like my

>acahlasia is no so bad.I appreciate your comments and point of view.Please

>reply i am very frightened of waht to expect on this.

>PS:soory for my bad english i am french

>Pierre.

>

>

>

>

>

>_______________________________________________________

>Send a cool gift with your E-Card

>http://www.bluemountain.com/giftcenter/

>

>

>

>

>

>

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Guest guest

Just so that you are aware, Dr. Gene Chaio is no longer taking patients at

IU Medical Center in Indiana. He was my doctor, but is moving. I am unsure

as to where, but when I find out I will let you know. Dr. Watkins is

taking his place. I am going for botox on the 28th. Done by Watkins not

Chaio. I will let you know if I can find out where Dr. Chaio is going.

Carol

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Guest guest

,

Dr. Dempsey also performed my surgery, Great doctor

with great recommendations!!!

Cheryl

--- <emurphy@...> wrote:

> I have another doctor to add to that list-- Dr. Dan

> Dempsey Temple

> University-- he just performed the myotomy on my

> boyfriend, but I know that

> he has turned down others for surgery, recommending

> less severe remedies.

> Good luck!!

>

> Re: new here

>

>

> Pierre,

> I think your English is just fine. My grandfather

> has also been diagnosed

> with Achalasia. I have done some research on the

> Internet (which is NO

> guarantee that the info is medically supported) but

> I've found several

> doctors that specialize in Achalasia. I plan on

> contacting a few of them. I

> will share with you whom the doctors are:

> Dr. Arnon Lambroza, Cornell Medical Center, The New

> York Hospital

> 215-517-7570

> I am MOST impressed with him and his work related to

> this disease. Here are

> the other docs I've stumbled across:

> Dr. Rolle

> Kaiser Foundation Hospital

> Walnut Creek

>

> Dr. Hunter

> Emory University

>

> Dr. Gene Chaio

> IU Med Center

>

> I want to say that you should be under a physicians

> care and not just

> attempting to seek remedies on the web. I'm sure you

> know this. Anyway,

> please " search " the names of the docs I've given you

> (because I know you'll

> find their phone numbers) and call them. That's what

> I plan on doing in

> order

> to help my grandpa.

>

> Hope this helps.

> Sincerely,

> Staci

>

>

>

>

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  • 6 months later...

hey marylin, i am the mother of two my son is 3 1/2 w ds and my daughter 2,

just actually wondering what part of canada youare from, as i am from bc,

and good for youguys, thanks sherri

New here

> Hi. I am new to this site . So I will tell you a little about our

> family

> My names is Marilyn and have been married 18 years. I have two

> beautiful step daugthers who are both married (ages 29 and 31) and

> the oldest has blessed us with 3 beautiful grandchildren.

> 10 1/2 years ago hubby and I adopted a sibbling group -- son was 3

> 1/2 and his sister was 2 1/2. Both are special needs. Son has FAE/ADD

> and our youngest daugher has DS.

> Naturally all of our children are the joy of our life -- but I must

> say my daughter who has DS has blessed me in more ways than you can

> thing. In fact she is lying on the floor beside me coloring at the

> moment -- she is never to far away.

> She just turned 13 this month -- a teenager -- seem so hard to

> believe that she is that age already.

> We have had our challenges along the way. When we adopted her she was

> not walking/talking not at all clear usually just grunts and not

> toilet trained. We were told that she would need hearing aids, that

> they thought she should eventually walk but because of so low muscle

> tone they thought she would not walk until closer to 6. Well, we had

> her home 3 weeks and she was up and running -- we just did not let

> her be down on her knees -- she then saw thins differently and up and

> away she went. Talking -- we could understand her but it took time.

> Lots and lots of talking to her, singing to her and reading to her.

> She has no problem at all now communicating at all her needs or

> making a conversation -- in fact people are really surprised at how

> well she keeps a conversation going or starts one -- lots of good

> vocabulary used. Hearing aids -- nope she doesn't need them, has

> never had an ear infection (touch wood). She needed a heart operation

> when she was 3 1/2. Doctors were really surprised at how well she

> healed -- told us that she would not use her one arm very well for a

> while and because of the operations she might be set back a bit.

> Well 24 hours after the operation she was in the kids playroom at

> the children's hospital wanting to swing on the monkey bars. Doctors

> said she was actually healed but wanted to keep her in for 4 days as

> they had never had a child do so well as she did . Only delay is

> toilet training. She became day dry when she was 9 but still needs a

> diaper at night. She only has one working kidney and I believe that

> is part of the problem. When she has her medical this month we will

> be looking at it differently to see if there is a reason why the

> night wetting has not stopped at all.

> As I have said she is just 13 which would make her grade 6 I believe

> in school. I homeschool her so I do not necessarly keep track of

> grade level. I teach her according to where she is at and what she

> needs to know. I believe that for everything she is able to do and

> including her speach and all she is well into grade 1. She has at the

> moment about 150 words that she can read, has just about got money

> recognition down pat, is just showing a desire to learn to tell time,

> prints lots of words -- copys everything but knows about 10 words

> that she can spell correctly and print. We are very proud of her

> achievements.

>

> Anyway that is all about us. Only other info is that we are from

> Canada and we are older parents -- we were in our 40's when we

> adopted these two very special children.

>

> But would like to communicate with others of girls (or boys) but

> especially girls of about the same age or little older so I can see

> where we might be going re the teenage issues of girls with DS.

>

> Looking forward to getting to now everyone here.

>

>

>

> Click reply to all for messages to go to the list. Just hit reply for

messages to go to the sender of the message.

>

>

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Wow! Like everyone tells me, " You've done a great job! " I know your daughter

has done equally as great. Thank you for sharing with us.

mom to Bridget 8 ds

sprout56782001 <sprout56782001@...> wrote: Hi. I am new to this site . So

I will tell you a little about our

family

My names is Marilyn and have been married 18 years. I have two

beautiful step daugthers who are both married (ages 29 and 31) and

the oldest has blessed us with 3 beautiful grandchildren.

10 1/2 years ago hubby and I adopted a sibbling group -- son was 3

1/2 and his sister was 2 1/2. Both are special needs. Son has FAE/ADD

and our youngest daugher has DS.

Naturally all of our children are the joy of our life -- but I must

say my daughter who has DS has blessed me in more ways than you can

thing. In fact she is lying on the floor beside me coloring at the

moment -- she is never to far away.

She just turned 13 this month -- a teenager -- seem so hard to

believe that she is that age already.

We have had our challenges along the way. When we adopted her she was

not walking/talking not at all clear usually just grunts and not

toilet trained. We were told that she would need hearing aids, that

they thought she should eventually walk but because of so low muscle

tone they thought she would not walk until closer to 6. Well, we had

her home 3 weeks and she was up and running -- we just did not let

her be down on her knees -- she then saw thins differently and up and

away she went. Talking -- we could understand her but it took time.

Lots and lots of talking to her, singing to her and reading to her.

She has no problem at all now communicating at all her needs or

making a conversation -- in fact people are really surprised at how

well she keeps a conversation going or starts one -- lots of good

vocabulary used. Hearing aids -- nope she doesn't need them, has

never had an ear infection (touch wood). She needed a heart operation

when she was 3 1/2. Doctors were really surprised at how well she

healed -- told us that she would not use her one arm very well for a

while and because of the operations she might be set back a bit.

Well 24 hours after the operation she was in the kids playroom at

the children's hospital wanting to swing on the monkey bars. Doctors

said she was actually healed but wanted to keep her in for 4 days as

they had never had a child do so well as she did . Only delay is

toilet training. She became day dry when she was 9 but still needs a

diaper at night. She only has one working kidney and I believe that

is part of the problem. When she has her medical this month we will

be looking at it differently to see if there is a reason why the

night wetting has not stopped at all.

As I have said she is just 13 which would make her grade 6 I believe

in school. I homeschool her so I do not necessarly keep track of

grade level. I teach her according to where she is at and what she

needs to know. I believe that for everything she is able to do and

including her speach and all she is well into grade 1. She has at the

moment about 150 words that she can read, has just about got money

recognition down pat, is just showing a desire to learn to tell time,

prints lots of words -- copys everything but knows about 10 words

that she can spell correctly and print. We are very proud of her

achievements.

Anyway that is all about us. Only other info is that we are from

Canada and we are older parents -- we were in our 40's when we

adopted these two very special children.

But would like to communicate with others of girls (or boys) but

especially girls of about the same age or little older so I can see

where we might be going re the teenage issues of girls with DS.

Looking forward to getting to now everyone here.

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Welcome to the list Marilyn. You will love the support. My son is 15. His

name is and he is a pizzaholic. He hates sweets and that just

mystifies his teachers. He is a jock too. He loves swimming and

basketball. His regular ed PE teachers just think he's great.

Elaine

New here

> Hi. I am new to this site . So I will tell you a little about our

> family

> My names is Marilyn and have been married 18 years. I have two

> beautiful step daugthers who are both married (ages 29 and 31) and

> the oldest has blessed us with 3 beautiful grandchildren.

> 10 1/2 years ago hubby and I adopted a sibbling group -- son was 3

> 1/2 and his sister was 2 1/2. Both are special needs. Son has FAE/ADD

> and our youngest daugher has DS.

> Naturally all of our children are the joy of our life -- but I must

> say my daughter who has DS has blessed me in more ways than you can

> thing. In fact she is lying on the floor beside me coloring at the

> moment -- she is never to far away.

> She just turned 13 this month -- a teenager -- seem so hard to

> believe that she is that age already.

> We have had our challenges along the way. When we adopted her she was

> not walking/talking not at all clear usually just grunts and not

> toilet trained. We were told that she would need hearing aids, that

> they thought she should eventually walk but because of so low muscle

> tone they thought she would not walk until closer to 6. Well, we had

> her home 3 weeks and she was up and running -- we just did not let

> her be down on her knees -- she then saw thins differently and up and

> away she went. Talking -- we could understand her but it took time.

> Lots and lots of talking to her, singing to her and reading to her.

> She has no problem at all now communicating at all her needs or

> making a conversation -- in fact people are really surprised at how

> well she keeps a conversation going or starts one -- lots of good

> vocabulary used. Hearing aids -- nope she doesn't need them, has

> never had an ear infection (touch wood). She needed a heart operation

> when she was 3 1/2. Doctors were really surprised at how well she

> healed -- told us that she would not use her one arm very well for a

> while and because of the operations she might be set back a bit.

> Well 24 hours after the operation she was in the kids playroom at

> the children's hospital wanting to swing on the monkey bars. Doctors

> said she was actually healed but wanted to keep her in for 4 days as

> they had never had a child do so well as she did . Only delay is

> toilet training. She became day dry when she was 9 but still needs a

> diaper at night. She only has one working kidney and I believe that

> is part of the problem. When she has her medical this month we will

> be looking at it differently to see if there is a reason why the

> night wetting has not stopped at all.

> As I have said she is just 13 which would make her grade 6 I believe

> in school. I homeschool her so I do not necessarly keep track of

> grade level. I teach her according to where she is at and what she

> needs to know. I believe that for everything she is able to do and

> including her speach and all she is well into grade 1. She has at the

> moment about 150 words that she can read, has just about got money

> recognition down pat, is just showing a desire to learn to tell time,

> prints lots of words -- copys everything but knows about 10 words

> that she can spell correctly and print. We are very proud of her

> achievements.

>

> Anyway that is all about us. Only other info is that we are from

> Canada and we are older parents -- we were in our 40's when we

> adopted these two very special children.

>

> But would like to communicate with others of girls (or boys) but

> especially girls of about the same age or little older so I can see

> where we might be going re the teenage issues of girls with DS.

>

> Looking forward to getting to now everyone here.

>

>

>

> Click reply to all for messages to go to the list. Just hit reply for

messages to go to the sender of the message.

>

>

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Marilyn,

Hi nice to meet you and your family. you sound great! Well my daughter

amanda is 11 ( a tween) with DS. Shes in 5th grade in an inclusion class,

she sings in the church choir and school chorus, shes been in 4 plays and

several dance performances. She will go to middle school next year. Shes

got friends with and without special needs.

She wears bifocal glasses for strabismus. She used to wear orthodics, but

has grown out of them. Her health was great, but now she has diabetes for a

little more than 2 years. She manages her food and shots very well and

checks her own blood sugar.

She loves videos and her cd player. she loves to read and can write stories.

She can do math, ( about a 2nd to 3rd grade level). She fights with her

younger brother constantly and her greatest wish is to have her own phone and

a cat.

Well if you have any specific questions about this age, you can email me

privately!

Oh, I just got her into a socialization group with special needs kids in her

age so they can deal with some of the teenage issues with their peers and a

social worker intern (college student). I want to see how that goes!

~ Mom to 11 DS and 7 NY

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  • 4 weeks later...

Welcome Penny, and Madison! We are happy you have joined us. I'm glad the

heart surgery went well!

mom to Bridget 8 ds

pkfoster63 <pkfoster63@...> wrote: I would like to take a minute to say

hello to everyone, and introduce

myself. My name is Penny. I have been married to for 1 year

and 2 months, and we were blessed with the birth of Madison on

October 12, 2001. She has DS, and she is the joy and center of our

lives. She was born with Atrioventricular Canal Defect and she had

heart surgery on January 11, 2002 to correct it. She is doing

wonderful! She is like a totally different baby. She now has the

energy to smile, laugh and coo. I hope to learn more about DS on

here and make some new friends!

Penny

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Welcome Penny, and Madison. We are glad you have joined us.

Sharon

Mom to (10, DS) and (6)

New Here

> I would like to take a minute to say hello to everyone, and introduce

> myself. My name is Penny. I have been married to for 1 year

> and 2 months, and we were blessed with the birth of Madison on

> October 12, 2001. She has DS, and she is the joy and center of our

> lives. She was born with Atrioventricular Canal Defect and she had

> heart surgery on January 11, 2002 to correct it. She is doing

> wonderful! She is like a totally different baby. She now has the

> energy to smile, laugh and coo. I hope to learn more about DS on

> here and make some new friends!

>

> Penny

>

>

>

>

> Click reply to all for messages to go to the list. Just hit reply for

messages to go to the sender of the message.

>

>

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  • 2 months later...
Guest guest

Welcome!

How are they progressing?

>

>In the last 10 months (since discovering was autistic) I feel like

>I've woken up and discovered I've been trapped in " The Matrix " and that

>joining this group is a little like taking the red pill...

>

Ah yes the matrix and the red pill - I know that one well!

Sheri

--------------------------------------------------------

Sheri Nakken, R.N., MA

Vaccination Information & Choice Network, Nevada City CA & Wales UK

$$ Donations to help in the work - accepted by Paypal account

vaccineinfo@...

(go to http://www.paypal.com) or by mail

PO Box 1563 Nevada City CA 95959 530-740-0561 Voicemail in US

http://www.nccn.net/~wwithin/vaccine.htm

ANY INFO OBTAINED HERE NOT TO BE CONSTRUED AS MEDICAL OR LEGAL ADVICE. THE

DECISION TO VACCINATE IS YOURS AND YOURS ALONE.

Well Within's Earth Mysteries & Sacred Site Tours

http://www.nccn.net/~wwithin

International Tours, Homestudy Courses, ANTHRAX & OTHER Vaccine Dangers

Education, Homeopathic Education

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Guest guest

hi Ann

welcome to the list

what are you using to chelate your boys?

Kathy in Canada

> My name is Ann and I'm a Canadian living in Spain with my husband and

three

> boys.

>

> We are in the process of chelating our two oldest boys ( 3 1/2

> moderately autistic and Xavier almost 5 who is a high-functioning

autistic)

> to remove mercury from thimerosal-containing vaccines they have

received -

> and lots of other heavy metals, it seems!

>

> Ann

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  • 1 month later...
Guest guest

Hi, I've just done some reasons why I don't vaccinate

john http://www.whale.to/vaccines.html

ps he may change personality if you tell him you don't want to vaccinate.

1. Believe it or not, there isn't any convincing evidence that vaccination

reduced the death rate for any disease such as measles, smallpox, polio, etc.

So, where is the benefit? If vaccination suppresses one disease another one

increases.

Now 1 in 86 children have autism, 1 in 5 asthma, 1 in 10 dyslexia....... and the

number one suspect is vaccination. The Government/Vaccine Industry is going to

carry on vaccinating, and claiming vaccines are safe, until every other child

has a vaccine induced disease, so only parent awareness is going to stop that.

2. The vaccines aren't safe unless you stretch the definition of " safe " to

include the risk of death, numerous diseases, and serious brain damage. Some

vaccines are less dangerous than others. Safe is breastfeeding. The safety

tests were two weeks in the case of the MMR, and conducted by the makers.

3. Governments (and the mainstream media) are run by the Corporations, for the

Corporations, so don't expect much light from that direction. The two main

government spokesman for MMR receive funding from the makers.

4. Vaccination, from top to bottom is run by the drug Corporation/Industry, so

it's self-policing, and its hard not to conclude that parent groups like the

NVIC are the only independent watchdogs on vaccine safety, and because of them

that any vaccine injury payments exist at all. The medical doctors are not in

the inner " knowledge loop " .

5. Knowledge of vaccine ingredients and their toxicity, eg mercury. Mercury

poisoning symptoms almost mimic autism symptoms.

6. Knowledge of vaccine contaminants like cancer causing SV40 virus. No real

effort is being made to screen vaccines for all contaminants and its left to the

makers. Now we have stealth viruses.

" FDA virologist Reeve........ acknowledged that the FDA suspended its own

independent tests of vaccine purity 15 years ago, leaving it entirely up to the

manufacturers to ensure the vaccine is contaminant free. " --'The Virus and the

Vaccine': Atlantic Monthly

7. Knowledge of medical politics. Vaccines are the medicine of one group of

medical doctors--the allopaths (drug using medical doctors). Many medical

doctors (usually ones knowledgeable in non-drug/alternative medicine) advise

against using vaccines. The allopaths have a medical monopoly-----this explains

many, many " mysteries " such as the " unknown " cause of numerous diseases such as

Alzheimer's, SIDS, & autism, and the " uncurable " nature of all diseases with

drugs (apart from bacterial infections), such as alzheimer's, AIDS, cancer,

arthritis, heart disease etc, and why you can only get drug medicine " free " on

the NHS.

" Society today is paying a heavy price in disease and death for the monopoly

granted the medical profession in the 1920's. In fact, the situation peculiarly

resembles that of the 1830s when physicians relied on bloodletting, mercurial

medicines, and quinine, even though knowing them to be intrinsically harmful.

And precisely the same arguments were made in defense of these medicines as are

employed today, namely, that the benefits outweigh the risks. In truth, the

benefits accrue to the physician, while the patient runs the risks. " -

Coulter

" We know the cause of SIDS. We can and have prevented them. It's all done with

a compound called ascorbate. Not to use it means deaths will continue. There

is no other answer. There never will be. For our findings are based on

scientific facts. Not medical opinion. " ---Dr Kalokerinos MD.

8. Even if you run the risk of vaccinating your child can still get the

disease.

9. The Bechamp disease model makes more sense than the Pasteurian disease model

of vaccinators which appears tailor made for a Corporation selling vaccines and

drugs. Pasteur's real character didn't do much for that model either--fraud,

plagarism etc. That means the naturopathic disease model makes more sense than

the allopathic one, and if you study the results of natural healing

(naturopathy, homeopathy, metabolic, nutritional) over allopathy you can see the

results are far more successful, and more capable of dealing with disease. And

look at allopathic iatrogenic disease, now officially the third cause of death,

costing about £4 Billion in compensation every year (UK).

10. No research is being conducted into the long term effects of vaccines (for

obvious reasons) so vaccination is still an experiment, and no research has ever

been done using non-vaccinated children (apart from a few done by parents, and

Dr Odent using Steiner children).

11. Vaccine income world wide costs taxpayers around $8 billion, plus the income

for treating vaccine induced disease. This could be 10 times as much, all paid

for by the taxpayer. Much of this money comes back down the money chain to the

allopaths, who, in reality, market the products of the drug industry, eg

vaccines.

" At least half of all U.S children have had otitis media by their first

birthday. By age 6 90% have had them. This condition accounts for 26 million

visits to physicians every year. In addition, about 1 million children have

tubes inserted in their ears every year, at a cost of $1000/operation. Thus $1

billion is spent each year on this operation. Just imagine what it means if this

is all, or mostly all, caused by the pertussis vaccine. This particular " glue

ear " type of otitis was not known in American medical practice before the late

1940's or early 1950's -- in other words, the time when the pertussis vaccine

was being introduced. " -- Coulter Ph.D.

New here

Hi everyone. My name is Liz and I am the mother to my 11 week old son

Coleton. As of now he hasn't received any of his shots. My doctor was

surprisingly very understanding about my wishes not to vaccinate at

this time. I'm not sure if I'll ever vaccinate at all. But I am

leaning towards no at this point.

Anyway, I am looking forward to talking with you all, and learning as

much as I possibly can.

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Guest guest

Hello Liz,

I have two twins, 2 monthes and a half old, so I feel close to your

situation ! I have decided not to vaccinate either (still asking

myself questions for the tetanus vaccine).

I also have 4 older children, one of them died one year ago, from

cancer ... since he had 7 different vaccines made less than one year

before diagnosis, you see what I am asking myself and why I have

started to research this way.

Welcome to our group !

=====

Cécile, wife to , mother of Nathalie(12), Sandrine(9), Karine(7) and

andre(forever 3.5) dx 02/00 NBIV N-MYC amplified. Left us on June 14th, 2001

andre sent us Hélène and Nicolas, born 04/23/02

e-mail : cecilecogez@...

andre's story : http://www.caringbridge.com/page/alexandre

__________________________________________________

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  • 4 weeks later...
Guest guest

Hi ,

welcome to the group.

I also went through pregnancy with untreated A. Pregnancy went O.K.,

but I lost a lot of weight after our son was born, so I had to stop

breast feeding, which was sad. Our son is almost 3 years now, I

finally decided to do the Heller Myotomy, which was not a big deal

for me (I took prescription pain meds for the first couple of days

for the soreness). I am now about 6 weeks post surgery and feeling

great.

Welcome to the group.

Tanja, California

> I am new here. I found this group while searching on the web.

It's

> nice to know there are other people being affected by this

disease.

> Now I have somewhere to go with my questions. I guess I could

tell

> you my story. I have always had problems digesting food. Since I

> was nine years old, I have been treated for asthma but the

digestion

> problem was never treated. I always got a very full feeling in my

> chest if I ate or drank anything. I vomited easily. I passed all

of

> this off as nothing of perhaps I needed to eat slower (I am always

> the last to finish) and chew my food better. I had my first child

in

> Nov. 01 and had developed a lump under my arm. When my daughter

was

> 12 days old, I went to my family physician about the lump. He

> couldn't figure it out so he did a chest x-ray. He told me that I

had

> a large mass on my lungs. Having been treated for moderately

severe

> asthma most of my life, I was scared to death. He said this could

be

> an advanced cancerous tumor. I was sent for a cat scan and on to a

> surgeon. After reviewing my cat scan, my surgeon said there was no

> mass but what my Dr. was seeing was my enormous esophagus. He did

> the scope to confirm I had achalasia. He did not feel comfortable

> treating me so he sent me to Vanderbilt University. After a PH

test,

> my surgeon there set up my surgery. I had a hellar myotomy in

> February. The most painful thing I have ever been through. I was

so

> sore I could barely move. I am now five months post surgery and

> feeling pretty good. I do get tightness in my chest at least twice

a

> week and will be discussing this at my 6 month post-op visit. I am

> just glad this whole ordeal is over. I was on liquid diets

totalling

> a month in a half. I lost 52 pouds during this time. Luckily I

had

> the extra weight of just having a baby. I gained 27 pounds during

my

> pregnancy and lost 52 by the time she was 3 months old. It was not

a

> fun way to lose weight.

>

> Well, that is my story. I am glad I have found this group.

Looking

> forward to visiting as often as work allows.

>

> Kelley

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  • 5 months later...

Hi Sandy, welcome to the list. My son was hospitalized after the MMR.

He didn't lose speech, but he was never the same. He suffered terrible

gastrointestinal symptoms, and was diagnosed FTT. He couldn't eat,

vomited all the time, and had terrible temper tantrums (melt downs). I

know of two very good pediatric gastro specialists who have found

measles in the gut, Dr. Krigsman, New York, and Dr. Buie, Boston.

But, you don't say whether your son has intestinal symptoms. There is

a very good pediatric neurologist Dr. Zimmerman Kennedy Krieger

in land. Don't know if you could convince him of vaccine injury

though. Has he ever received an MRI?

This is the link for Dr. Zimmerman.

http://www.kennedykrieger.org/kki/kki_staff.jsp?pid=1068

> Hello all and Happy New Year,

>

> I am new and here is our story. My son Wade (is 3 1/2 years old)

lost the ability to speak after the MMR at the age of 13 months.

Prior to the shot he had been babbling, and saying ma and hi. He

could make no speech sounds at all for the next 14 months--all we

heard was grunts from him. He also appeared to not hear when we said

his name. He also had episodes when his eyes would roll back in his

head for a few seconds. We now know these could have been seizures.

These resolved about the time he started babbling again at the age of

27 months. This past August he was diagnosed with a severe

phonological disorder. His speech is improving and we are pleased

with his progress. His hearing tested normal.

>

> Although we have gotten both a medical and religious exemption for

vaccines, we still want to know what happened to him. Was it mercury

toxicity from the thimerosal? Was it a vaccine induced encephalopathy

that caused damage from which he is slowly recovering? Was it an

autoimmune reaction? We are considering filing a claim for an off the

table injury with the Vaccine Injury Compensation Fund. Has anyone

been down that path and willing to share about it?

>

> I am hoping someone can relate to our story. This has been a long

and lonely road. Finding a doctor who thinks that vaccine injuries

can and do occur is a very very difficult task. We do have him on

video after the MMR when he could only grunt-it was as though he could

not move his mouth. Can any one recommend doctors (pediatric

neurologists, language regression specialists, vaccine injury

specialists) who can evaluate our son/ videotape and tell us what may

have happened? We are in KY but willing to travel to see the right

expert.

>

> Thanks.

> Sandy in KY

> mother of Wade (age 3 1/2)

> severe phonological disorder

> possible history of seizures ????

> history of language regression

>

>

>

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  • 1 year later...
Guest guest

, well come to the group. I have not had

the Heller and can't answer your questions

but glad you found us and was able to research

this disease and know what you wanted.

Some of the members here who have had the

surgery can probably answer your questions

about attending classes. I would certainly ask

the surgeon about that when you see him as well.

Where do you attend school? I have a granddaughter who attends UNC at Chapel Hill.

I think the quarter there will be over in April

and if you don't go during the summer quarter,

as Cindi said maybe you could schedule it then.

Please let us know what the surgeon says.

Hugs,

Maggie

Alabama

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Guest guest

- I can't really answer your questions, but I do applaud you for doing your research & opting for the Heller. I am 38 & have had 4 dilations & the last one only gave me relief for about 6 hours (I did eat a decent lunch! hahaha!).

When is your surgery? I am also very excited about mine on April 19....one month from tomorrow!!!!!!! And maybe you can talk to someone at the college about your situation. Having worked in higher ed, I know that exceptions can be made for medical issues.

Another option might be to have a dilation (1 day out of school) to "tide you over" until you can have a Heller in the summer. Mine didn't help much, but there was enough relief to delay some of the problems.

Best wishes!!

Cindi in PA

____________________________________________________ IncrediMail - Email has finally evolved - Click Here

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