New member

[Guest guest]

Anne,

Our girls are all adopted. We didn't go looking for babies

with DS, the Lord just blessed us with them. We had started out to adopt

anybody, waited a few years and then Heidi came along. I knew from the first

phone call (when the caseworker asked us if we were interested) that she was

OUR baby! We got her @ 10 wks. of age & Caleb was born 7 months later. When

Cal was 9 1/2 months old we got another phone call.

Corrie was supposed to be adopted privately but when the family learned

she had DS they didn't want her. Our caseworker called to ask if we knew

anybody who wanted to adopt a little girl with DS & we said " How about us? " .

She arrived 4 days later at a whopping 5 lbs! Whew!

The next ten years is a blur of activity! We also had, during this time,

two foster kids with special needs, and adopted Mae from Taiwan. That

was a two year battle with the U.S. gov't to get her here. She's been with

us two years the first of August.

None of our girls have instability of the antloaxial joint. They were each

x-rayed around the age of 3. Heidi is due for another x-ray to check for it next

year at age 12.

Burghardt

Mom to Heidi 10 DS, Caleb 10 NDA,

Corrie 9 DS and Mae 5 DS

[Guest guest]

OOPS! It sure looks like I don't know basic arithmetic, doesn't it? Heidi will

be 11 this Saturday!! :-D

Burghardt

jcburg@...

>Heidi is due for another x-ray to check >for it next year at age 12.

> Burghardt

>Mom to Heidi 10 DS, Caleb 10 NDA,

>Corrie 9 DS and Mae 5 DS

[Guest guest]

OOPS! It sure looks like I don't know basic arithmetic, doesn't it? Heidi will

be 11 this Saturday!! :-D

Burghardt

jcburg@...

>Heidi is due for another x-ray to check >for it next year at age 12.

> Burghardt

>Mom to Heidi 10 DS, Caleb 10 NDA,

>Corrie 9 DS and Mae 5 DS

[Guest guest]

anne.lennon@... wrote:

Would

> also like to hear from anyone who has a child with

> instability of the antloaxial joint we have just learned

> that has this and are obviously

> concerened.thanks Anne. Redcar Cleveland.

We learned a couple of years ago that Danny, DS, 10, has instability

" on flexion " (ie. head forward and down). Honestly, it hasn't been a big

issue. We just avoid his participating in activities like tumbling,

diving, gymnastics, soccer--anything that increases the likelihood of

injury to the neck. The only small disappointment was soccer. One of his

older sisters played on " serious " teams for years and always thought she

would coach a Special Olympics team when he became old enough.

Unfortunately, his school seemed to be clueless about AAI. (He no

longer receives PT or OT and is in a regular PE class.) Once or twice a

year, I remind all his teachers about restrictions on his activities,

and I have also requested that the school system provide them with

written info. about AAI.

Bev

[Guest guest]

anne.lennon@... wrote:

Would

> also like to hear from anyone who has a child with

> instability of the antloaxial joint we have just learned

> that has this and are obviously

> concerened.thanks Anne. Redcar Cleveland.

We learned a couple of years ago that Danny, DS, 10, has instability

" on flexion " (ie. head forward and down). Honestly, it hasn't been a big

issue. We just avoid his participating in activities like tumbling,

diving, gymnastics, soccer--anything that increases the likelihood of

injury to the neck. The only small disappointment was soccer. One of his

older sisters played on " serious " teams for years and always thought she

would coach a Special Olympics team when he became old enough.

Unfortunately, his school seemed to be clueless about AAI. (He no

longer receives PT or OT and is in a regular PE class.) Once or twice a

year, I remind all his teachers about restrictions on his activities,

and I have also requested that the school system provide them with

written info. about AAI.

Bev

[Guest guest]

Hello, my name is norma i am 26 and i live in North yorkshire . Uk.

I am married to iain and we have 5 children. I am a carrier for "Fragile x syndrome" (which i didn,t know about until 4 years ago) . My eldest son is totally affected by fragile x ,he will be 9 on the 28th august. my 2nd boy is totally free from all health problems ( yipee). He is 7 yrs. Ebony is 5 years old and carries the gene for fx she suffers from emotional and social problems also very hyper. Oliver who is almost 3 was born with Hirschsprungs disease ,at the moment he has a permanent illeostomy. kira is just 9 months old we are awaiting results for fx to see if she has it, she is also allergic to all dairy products, wheat & gluten.

So as you can imagine there is never a dull moment in our household. It is so nice to find a group where everybody has some kind of problem to share.

Have a nice day everybody

normax

norma & iain wilde & kids

[Guest guest]

Hi Norma!!! You sure do have your hands full!!! Do you have help with the children??? You will have to tell us about Fragile X Syndrome... How do you cope???

Welcome to the family!!! We have lots of folks careing for their ill Children on here! Lots of Folks that are ill of all diferent types and stages of diseases ( Write whenever you have time!!!

{{{ Welcome Hugs }}}

Helen

Hello, my name is norma i am 26 and i live in North yorkshire . Uk. I am married to iain and we have 5 children. I am a carrier for  "Fragile x syndrome" (which i didn,t know about until 4 years ago) . My eldest son is totally affected by fragile x ,he will be 9 on the 28th august. my 2nd boy is totally free from all health problems ( yipee). He is 7 yrs. Ebony is 5 years old and carries the gene for fx  she suffers from emotional and social problems also very hyper. Oliver who is almost 3 was born with Hirschsprungs disease ,at the moment he has a permanent illeostomy. kira is just 9 months old we are awaiting results for fx to see if she has it, she is also allergic to all dairy products, wheat & gluten. So as you can imagine there is never a dull moment in our household. It is so nice to find a group where everybody has some kind of problem to share. Have a nice day everybody normax

norma & iain wilde & kids

Always put yourself in others' shoes. If you feel that it hurts you, it probably hurts the other person, too.

[Guest guest]

Welcome Norma

Chelle

[Guest guest]

Have your notarized exemption letter already written out and in your file at

home!

Kathleen

In a message dated 8/12/2001 7:45:36 AM Central Daylight Time,

jbreen75@... writes:

> Hello Group,

> I would like to introduce myself,I am the Mom of 3 children ages 5

> & under.They have all started on the usual course of vaccinations.

> When my oldest was 10 1/2 months old,she was diagnosed with a brain

> tumor.She was given 2-6 months to live,but after seeking alternative

> cancer treatment,she is alive & thriving over 4 years later!!(No

> wonder I have a general mis-trust of the medical establishment !!)

> She has been exempt from some immunizations due to her status as a

> cancer patient,and her doctor made sure her brothers received only

> the non-live polio vaccine to protect her.She will be entering

> kindergarten in a few weeks,and she has a physical this week which

> should include booster shots required to enter school( this will be

> her 1st visit with family doc in several years as her oncologist has

> been doing all her check-ups during this time).The younger boys had a

> real healthy winter,so they have missed a few well-child visits,and

> are now behind on some of their vaccines.

> I am becoming more & more uncomfortable about " catching them up "

> but I am also worried that the " vaccine police " may catch wind of our

> situation,and we could be in trouble.I plan to discuss this with our

> doc this week( there are lots of good info links on this site,but my

> printer is on the blink now,I'd like to take some articles with me).

> How do I approach this subject with my doctor without the fear that

> he may contact CPS claiming neglect?

> Thanks in advance,

> Afraid to use my real name,

> Just call me,

> J.J.

>

>

>

>

>

[Guest guest]

Hi JJ,

Nice to meet you. Im Sue from Wales in the Uk. I have a 2yr old daughter who

has had some jabs. I stopped just before the MMR and Men C and she wont be

having anymore. I have said before to the american moms on this list, that

I cant imagine what it must be like to have the threat of your children

taken from you just becos you dont want to vaccinate anymore! It is

scandalous!!

Anyway, this list is full of wonderful people with a vast knowledge on all

kinds of things. There are several people with alot of experience regarding

CPS etc. Im sure they will post to you soon.

Welcome aboard, help is at hand!

SUE, Ruby(2)

Wales, UK

[Guest guest]

Hello JJ

That is my son's initials, JJ...

May I ask what the alternative treatment for your daughter was....I am

worried that my son may have an overdose of radiation. He had a cat

scan when he was like 2-3 and then it came out that lots of kids are getting

brain cancer or cancer from the cat scans. Mostly because they forget to

turn down the dosage and give the adult dosage to children. Just would like

to learn about alternative treatments that WORK, and it is obvious yours

did for your daughter.

new member

> Hello Group,

> I would like to introduce myself,I am the Mom of 3 children ages 5

> & under.They have all started on the usual course of vaccinations.

> When my oldest was 10 1/2 months old,she was diagnosed with a brain

> tumor.She was given 2-6 months to live,but after seeking alternative

> cancer treatment,she is alive & thriving over 4 years later!!(No

> wonder I have a general mis-trust of the medical establishment !!)

> She has been exempt from some immunizations due to her status as a

> cancer patient,and her doctor made sure her brothers received only

> the non-live polio vaccine to protect her.She will be entering

> kindergarten in a few weeks,and she has a physical this week which

> should include booster shots required to enter school( this will be

> her 1st visit with family doc in several years as her oncologist has

> been doing all her check-ups during this time).The younger boys had a

> real healthy winter,so they have missed a few well-child visits,and

> are now behind on some of their vaccines.

> I am becoming more & more uncomfortable about " catching them up "

> but I am also worried that the " vaccine police " may catch wind of our

> situation,and we could be in trouble.I plan to discuss this with our

> doc this week( there are lots of good info links on this site,but my

> printer is on the blink now,I'd like to take some articles with me).

> How do I approach this subject with my doctor without the fear that

> he may contact CPS claiming neglect?

> Thanks in advance,

> Afraid to use my real name,

> Just call me,

> J.J.

>

>

>

>

>

[Guest guest]

Dear Rhonda:

What the detox program is supposed to be about is to get rid of the toxins in

the body from the vaccinations. Not so much the actual antibodies that have

been produced, but any chemicals and such that go along with the vaccination.

She has given me a whole program, mostly homeopathy, that is supposed to

slowly get rid of the bad effects the vaccines may have caused. She says that

as the detox takes effect and toxins are released I will see positive changes

in my children. I did get a reference from her and they only had wonderful

things to say. Just having started the program today, I can't tell you yet

how it is going, but I will be more than happy to keep you updated. This

doctor believes that many conditions (asthma, autism, PPD. chronic

illnesses...) we see in our children are vaccine-induced.

I did tell the NP at my pediatricians office that I don't want my daughter to

get her scheduled vaccinations. But remember, my daughter is 6 years old, and

so basically she has had most of the " mandated " vaccines. When I asked if

this was going to be a problem, she said not for her. She is open to

alternative medicine, that is why I see her. But I have to say that when I

first signed up with this group of doctors, I was told that they wouldn't

accept my children as patients, if I didn't immunize. So, I'm not sure how it

will work out. I'm hoping I won't have to try and find another group.

I was also able to get a medical exemption form from the doctor who is

helping me do the detox. I would be glad to give you her name and number if

you are interested. I'm pretty sure she does phone consults, if it is too far

away for you. But please remember, I've just started this and I'm not sure

yet what sort of trouble may lie ahead.

Talk with you soon,

Pam

[Guest guest]

I would be extremely interested in contacting your dr. Thanks in advance for

the info. :-)

<< I would be glad to give you her name and number if

you are interested. I'm pretty sure she does phone consults, if it is too

far

away for you. But please remember, I've just started this and I'm not sure

yet what sort of trouble may lie ahead. >>

[Guest guest]

Unless you are not afraid to lose this person as your doctor, I would not

bring it up at all. Your Dr. has probably heard the non vax argument and

has an answer for every point that you can bring up. You do not sound

confident and you might wind up doing something you regret later. Do not

talk to them about it. If I were you, I would delay the visit until I had

further information and felt better about my decision. Does your child

really need a physical right now?

>From: jbreen75@...

>Reply-Vaccinations

>Vaccinations

>Subject: new member

>Date: Sun, 12 Aug 2001 12:45:01 -0000

>

>Hello Group,

> I would like to introduce myself,I am the Mom of 3 children ages 5

> & under.They have all started on the usual course of vaccinations.

> When my oldest was 10 1/2 months old,she was diagnosed with a brain

>tumor.She was given 2-6 months to live,but after seeking alternative

>cancer treatment,she is alive & thriving over 4 years later!!(No

>wonder I have a general mis-trust of the medical establishment !!)

> She has been exempt from some immunizations due to her status as a

>cancer patient,and her doctor made sure her brothers received only

>the non-live polio vaccine to protect her.She will be entering

>kindergarten in a few weeks,and she has a physical this week which

>should include booster shots required to enter school( this will be

>her 1st visit with family doc in several years as her oncologist has

>been doing all her check-ups during this time).The younger boys had a

>real healthy winter,so they have missed a few well-child visits,and

>are now behind on some of their vaccines.

> I am becoming more & more uncomfortable about " catching them up "

>but I am also worried that the " vaccine police " may catch wind of our

>situation,and we could be in trouble.I plan to discuss this with our

>doc this week( there are lots of good info links on this site,but my

>printer is on the blink now,I'd like to take some articles with me).

> How do I approach this subject with my doctor without the fear that

>he may contact CPS claiming neglect?

>Thanks in advance,

>Afraid to use my real name,

>Just call me,

>J.J.

>

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp

[Guest guest]

Hi Pam!

Welcome and thanks for replying to my previous post! Sounds like we

are in much the same boat! I'm glad we found this list, aren't you?

By the way....what do you mean a detox program and what is the

purpose of it?

Just curious as I am sure I will be looking for a new doctor as well!

~Rhonda

> Hi Everyone:

> I just previously introduced myself quickly in a reply to someone,

> but

> I wanted to officially say hello and to say that I guess my real

> reason for wanting to join the group is to get information about

> vaccinations and also to hook up with other parents in similar

> situations.

>

> I've never been comfortable with vaccinating my children, but was

> always too afraid not to do it. Finally, I guess I became more

afraid

> to do it, than not to. What was so hard and weird, was that I

didn't

> know what to do and felt like I was breaking the law! I mean these

> are

> my children and I have to inject something into their bloodstreams

> because the government tells me to? With lots of phone calls I was

> able to track down an MD that would give me a medical exemption

form

> for my daughters and also put them on a detoxification program,

which

> I have just begun today.

>

> It's such a difficult decision to make because of the way most of

> the

> medical world and society presents it. It's like if you don't

> vaccinate, your child may one day contract a horrible disease and

die

> from it. Going against the mainstream is not an easy thing to do

and

> I'm definitely feeling nervous about this whole thing. But, deep

down

> inside it just feels like the right thing to do. I hope I can learn

> from everyone and possible help others, too, along the way. Most of

> all, it's just nice to be able to talk to others who dare to

question

> the mainstream and who have similar beliefs.

>

> Thanks,

> Pam

> 2 girls

> (6 years and 10 years old)

[Guest guest]

Thanks, Pam. I'm assuming that you are seeing a homeo dr.?

I'm just hearing of these and intend on checking them out today. I

do have some dear friends who are chiropractors. They do not

vaccinate but take their children to a regular dr. here in town. I

have been told from other friends that he is very pro-vax, but my

chiropractor friends say he doesn't pressure them...of course, they

exchange patients at times, so I'm sure the dr. wouldn't say anything

to them.

I'll be interested to hear about your detox program. Keep me posted!

~Rhonda

> Dear Rhonda:

>

> What the detox program is supposed to be about is to get rid of the

toxins in

> the body from the vaccinations. Not so much the actual antibodies

that have

> been produced, but any chemicals and such that go along with the

vaccination.

> She has given me a whole program, mostly homeopathy, that is

supposed to

> slowly get rid of the bad effects the vaccines may have caused. She

says that

> as the detox takes effect and toxins are released I will see

positive changes

> in my children. I did get a reference from her and they only had

wonderful

> things to say. Just having started the program today, I can't tell

you yet

> how it is going, but I will be more than happy to keep you updated.

This

> doctor believes that many conditions (asthma, autism, PPD. chronic

> illnesses...) we see in our children are vaccine-induced.

>

> I did tell the NP at my pediatricians office that I don't want my

daughter to

> get her scheduled vaccinations. But remember, my daughter is 6

years old, and

> so basically she has had most of the " mandated " vaccines. When I

asked if

> this was going to be a problem, she said not for her. She is open

to

> alternative medicine, that is why I see her. But I have to say that

when I

> first signed up with this group of doctors, I was told that they

wouldn't

> accept my children as patients, if I didn't immunize. So, I'm not

sure how it

> will work out. I'm hoping I won't have to try and find another

group.

>

> I was also able to get a medical exemption form from the doctor who

is

> helping me do the detox. I would be glad to give you her name and

number if

> you are interested. I'm pretty sure she does phone consults, if it

is too far

> away for you. But please remember, I've just started this and I'm

not sure

> yet what sort of trouble may lie ahead.

>

> Talk with you soon,

> Pam

[Guest guest]

I am also 49, and had a myotomy in 1971. Mine worked for longer than yours, but otherwise, we seem to be in the same situation right now -- I eat only soft foods and liquids, and am seeing specialists about what to do next.

Just today I travelled 50 miles to Chicago to see 3 doctors who specialize in this. I was told not to just ignore it and live with it. First of all, the esophagus keeps stretching, is constantly irritated by food sitting there, which can cause cancer, and I could aspirate food into my lungs and get pneumonia. I have already lost about 20 pounds (isn't that a stone?) and could stand to lose about 30 more. But today they told me that I could be malnourished while still being overweight. Then, I would not be a good candidate for surgery, not being in a healthy state.

I am still undergoing one more test -- a motility study (manometry), but then will decide whether to try one more balloon dilatation (I've had two, but long ago), or go ahead with another myotomy. This time, the myotomy would probably be longer, cutting up and down the esophagus and stomach more.

I'm telling you this so that you will not just live with it, either. There may be a point at which surgery has done all it can, but I don't think you are there yet.

Hope this information encourages you.

a

[Guest guest]

a -

I saw in your message that you are close to Chicago. I'm in Madison,

Wisconsin. Are you in Illinois? Hi from a fellow midwesterner!

> I am also 49, and had a myotomy in 1971. Mine worked for longer

than yours,

> but otherwise, we seem to be in the same situation right now -- I

eat only

> soft foods and liquids, and am seeing specialists about what to do

next.

> Just today I travelled 50 miles to Chicago to see 3 doctors who

specialize in

> this. I was told not to just ignore it and live with it. First of

all, the

> esophagus keeps stretching, is constantly irritated by food sitting

there,

> which can cause cancer, and I could aspirate food into my lungs and

get

> pneumonia. I have already lost about 20 pounds (isn't that a

stone?) and

> could stand to lose about 30 more. But today they told me that I

could be

> malnourished while still being overweight. Then, I would not be a

good

> candidate for surgery, not being in a healthy state.

>

> I am still undergoing one more test -- a motility study

(manometry), but then

> will decide whether to try one more balloon dilatation (I've had

two, but

> long ago), or go ahead with another myotomy. This time, the

myotomy would

> probably be longer, cutting up and down the esophagus and stomach

more.

>

> I'm telling you this so that you will not just live with it,

either. There

> may be a point at which surgery has done all it can, but I don't

think you

> are there yet.

>

> Hope this information encourages you.

>

> a

[Guest guest]

I have had botox injections, as have many on this site. They are definitely temporary fixes, and doctors are recommending them less and less often, especially for healthy people who are good candidates for surgery. Each injection seems to last a shorter length of time. After 3 years, they didn't help me at all, though she may be having better luck than that.

I have two suggestions for finding a doctor who specializes in this.

1. Go to Laparoscopy.com and do a doctor search on myotomy (the name of the surgery), or some other key word. I just tried it, and saw a doctor from Nashville, a doctor s at Vanderbilt University Medical Center.

2. Find the site for a local large hospital. University Medical Centers are usually good for specialties of this kind. Some of them have search capabilities or physician referrals.

Hope this helps your friend!

a

[Guest guest]

(jennlee),

I live north of Chicago on the Wisconsin border -- probably about 2 hours from Madison! Have you found a good, experienced doctor there?

a

[Guest guest]

Scot:

I had the Heller myotomy on Dec. 11th in Nashville, TN. The physician/surgeon was Dr. E. P. Chambers, Jr. He operates at St. Hospital. Office number 615-385-1547. My experience with him was excellent. He has done a number of achalasia surgeries and my pre-surgery investigation lead me to believe I would be very happy with him as a technician (and a person) and I was.

I was advised by my friends in the medical profession to avoid the dilation and Botox route and I did. Except for a couple of days post-surgery discomfort I thought the whole ordeal was "a piece of cake." I'll be happy to discuss the routine I was exposed to before and after either by phone or E-mail with you or your friend.

(qedele@... ()

[Guest guest]

Hi,

I too am a new member but have been reading messages

here for the past 7 weeks. I was diagnosed with Achalasia

the later part of June this year. Unlike many of you, I

have only had symptoms since October of last year. I do

have all the classic ones though, the cough, choking

hoarseness, vomiting, and chest pains. I lost 30 lbs

from January through April, but have maintained my

weight since then. However, I must say I eat nonstop.

Something has to be getting down.

I spent the first 8 months just trying to find what my

problem was and getting a name for this disease. MY

local doctors finally said I had a motility problem, but

they did not know what caused it, there was no known

treatment and dismissed me. I went then to the University

of Alabama Medical Center in Birmingham, Al. After the

usual testing most of you have experienced, I was given

the name of Achalasia. I have spent many hours on the

net researching this and that is how I found you. What a

breath of fresh air it was to find people who knew what this

was and how I felt. I found a good sight for information is

www.medscape.com.

I had a Botox shot in mid July. That did not work for me at all.

I am scheduled tomorrow for a dilatation. I can only trust

I am taking the right steps.

I read where a number of you drink water to wash down

your food. Water comes back as readily as food does with

me. I have always been a heavy water drinker and miss

that more than the food.

I am very thankful that I did not develop this as early in

life as so many of you have. I at least had 70 years free

of Achalasia, and at my age, hey, I might just out run this

thing:).

Good luck and Blessings to all.

Magg

[Guest guest]

I just heard a medical report on the radio this morning, that Viagra, of all

things, has been successful in helping us with Achalasia. Has anyone else

heard about the Italian study?

Thanks,

Gayle

[Guest guest]

Hi a,

I go to the UW Hospital and Clinics and see Doctor Gaumnitz:

http://www.uwdoctors.org/doctors/bio/GaumnE1.htm

He told me I was one of his youngest achalasia patients (then at age

30) so I doubt he sees that many achalasia patients overall. He is a

member of the International Group for the Study of

Neurogastroenterology & Motility.

When I had my barium swallow prior to diagnosis, the doctor who saw

me at that test told me I should see Dr Gaumnitz, so perhaps he is

the GI doc with the most experience in the subject at UW.

Personally, I don't like him that much and am thinking of trying

another doctor, but I don't know. Basically I'm not seeing anyone

right now, haven't for about a year. I do need to go back though.

Either for another dilation or the myotomy.

> (jennlee),

>

> I live north of Chicago on the Wisconsin border -- probably about 2

hours

> from Madison! Have you found a good, experienced doctor there?

>

> a

[Guest guest]

I found something on a study on the net about a year ago and posted

to this group about it.

Someone joked in the posts that their problem was getting my food

down, not up!

http://www.healthcentral.com/news/newsfulltext.cfm?

id=27213 & StoryType=ReutersNews

http://www.healthcentral.com/drdean/deanfulltexttopics.cfm?id=27402

These links have some more info on the topic if anyone's interested.

I can just imagine telling my co-workers I'm on Viagra! Too funny.

> I just heard a medical report on the radio this morning, that

Viagra, of all

> things, has been successful in helping us with Achalasia. Has

anyone else

> heard about the Italian study?

> Thanks,

>

> Gayle