Re: vaccines

[Guest guest]

Anne,

I do agree with you about the immunizations being very important. I do

believe that children need to be protected from these awful, sometimes fatal,

diseases. However, I feel like I am in a catch 22. I have two daughters

with Mito/grand mal seizure disorder and both have heart defects (PDA and

ASD). My 3 year old just recovered from Kawasaki's Disease and my youngest

is autistic. I was literally hounded by every specialist who walked into my

daughters hospital room about the fact that she was not immunized and to tell

you the truth, I resent it. I don't resent you at all, I am just explaining

why the experience left a bad taste in my mouth. 1)Because I don't feel that

they were taking my daughters' special needs into consideration (i.e.

seizures and weak immune systems) and 2)Because they don't tell you about

titers. They were actually surprised when I asked them about doing a titers.

Both of my girls have since been given 1 set of shots each...excluding MMR

and Chicken Pox because of the autism and because of the Kawasaki's. I will

consider giving these vaccines only if my ped will give them separately-one

at a time- I don't want mercury injected into my children. Then, I would

like a titers run to see if a second set of shots is necessary.

What doctors don't tell you SOMETIMES can harm your children, and the sad

thing is that most of the time it is OTHER people's children who are

affected. But you can not tell just by looking at a child how their body will

react to certain chemicals and toxins being injected into them.

I do not condemn parents who choose to immunize though. I think we all do

what we think is best for our children. I just have a hard time with some

people's attitude (not yours) towards parent's who choose not to vaccinate.

We all need support.

Jayne (Carly and Maddy's mama)

[Guest guest]

Re Vaccines: My son's Doctor does not think because we don't know as yet

that he should have any live virus vaccines. Really looking at the studies

being done with the MMR and autism link and the mito link. My son ended up

getting chicken pox and it was as bad as his typical sister. Dr. sad no to

second MMR vaccine until we learn more OR an outbreak occurs. I also

agonised over this decision and asked her to make it for me. I decided to

immunise my daughter. Now I have to decide what about hepatitis for her. I

appreciate all thoughts of view here on the list as it helps me think. What

if he gets the disease? Kathy F.

[Guest guest]

Michele, Anne, Kathy and all,

Vaccines are also a very hot topic on the autism lists these days.

The problem with the vaccines is that they contain (ed) MERCURY.

They have agreed to remove the mercury (in the form of thimerosal)

from the infant shots, but they have not recalled the existing supply of

mercury containing vaccines and they have not removed it from " adult "

HepB and Td booster that are given to older children. Mercury is known

to be extremely neurotoxic and can impair mitochondrial functioning.

There is a good paper discussing the link between autism spectrum

disorders and mercury toxicity on the Autism Research Institute

website.

http://www.autism.com/ari/mercurylong.html Long version

http://www.autism.com/ari/mercury.html Short version

My own son regressed after his Kindergarten boosters at 4 years

of age. He was diagnosed with atypical autism 2 months later.

Over the past five years my son had increasing problems with muscle

strength and tone, ever decreasing energy levels, and poor growth. His

pediatrician and endocrinologist suspected that he had a mitochondrial

disorder. My son also started having a lot of trouble with his eyes--decline

in color vision, blurry blotches, convergence insufficiency, and difficulty with

eye movement. When paired with his other problems--GI dysfunction, gluten

and casein intolerance, loss of speech and articulation after vaccines, immune

system abnormalities, myoclonic jerks, and autistic like behavior--it became

increasingly clear that mercury MIGHT be to blame for at least some of my

son's problems.

I did some research and discover that mercury can inhibit mitochondrial

enzymes and depolarize the mitochondrial membrane which reduces ATP

production. Membrane depolarization also alters the flux of ions and small

molecules across nerve terminal membranes. Then I found an article on mercury

toxicity and delayed symptoms. It was very upsetting to read about the delayed

symptoms of mercury toxicity many of which my son at the age of nine was

beginning to display (five years after his post vaccine regression).

My son has shown good gains with chelation. The most remarkable gains were in

muscle strength and apparent mitochondrial functioning. Yesterday was his three

year review IEP at school. Everyone had great reports of improvements. He met

all

of his goals. His hand strength and endurance have shown gains for the first

time in

three years. Socially he is doing much, much better. He no longer needs a

Behavior Intervention Plan!! His hand writing is legible and academically

he is doing great. His eye skills and muscle strength improved with each round.

His

new found confidence in physical tasks has helped him socially as well. It has

been

one of the most significant interventions that we have done. He also showed

good

gains on the gf/cf diet and some gains with secretin.

[Guest guest]

>

>

>My son has shown good gains with chelation. The most remarkable gains were in

>muscle strength and apparent mitochondrial functioning. Yesterday was his

>three

>year review IEP at school. Everyone had great reports of improvements.

this is wonderful. tell me what type of medicine they used for

chelation and how he did with it. How long did you have to do it for?

Anne

[Guest guest]

At 06:54 PM 10/22/2000 -0400, you wrote:

>My 3 year old just recovered from Kawasaki's Disease and my youngest

>is autistic. I was literally hounded by every specialist who walked into my

>daughters hospital room about the fact that she was not immunized and to tell

>you the truth, I resent it.

That is such a nasty disease. How did they end up treating it? How is

he/she doing now?

I would resent it too if i was hounded by professionals about a choice I

had made. I can understand their concern and they are trained to want to

make sure that parents/patients make informed decisions. But if you

explained to them that it has been a well thought out and informed decision

then I can understand your feelings of wanting to be left alone. Sometimes

i do not think they realize how it feels to be you - I wonder if they

realize that their good intentions feels like hounding to you and i would

not be shy about telling them nicely that you appreciate their concern but

that you have made this decision with your eyes open and ask that they

respect it.

Unfortunately this is one of those areas where it is not strictly black and

white although there are more than enough people on either side of the

fence who see it that way.

>What doctors don't tell you SOMETIMES can harm your children, and the sad

>thing is that most of the time it is OTHER people's children who are

>affected. But you can not tell just by looking at a child how their body will

>react to certain chemicals and toxins being injected into them.

No kidding - if only it were that easy. I agree that lack of information

can be just as dangerous as the wrong information.

>I do not condemn parents who choose to immunize though. I think we all do

>what we think is best for our children. I just have a hard time with some

>people's attitude (not yours) towards parent's who choose not to vaccinate.

>We all need support.

I could not agree with you more. No one should be condemned for their

choice - of either vaccinating or not vaccinating. I appreciate that you

said this as all too often people who do not vaccinate their children are

just as hard on folks who do as they perceive the pro-vaccine people to

be. I appreciate the wealth of information that you and others have on

this subject. We can all learn a lot from one another.

Anne

[Guest guest]

This was good too...what did you think about this...this is Rhys dad, huh?

Okay...love you MOM

[Guest guest]

,

Thanks for sharing your sons story. My daughter is dealing with similar

circumstances (mito and autism). But, in her case, I don't think it was

triggered by the vaccines because we withheld until she was two ALL vaccines.

She has since had one set excluding MMR and Chicken Pox, and has not

regressed. But, I still feel strongly against mercury being injected into my

children because of exactly what you were saying. I feel that my kids are at

very high risk because they already have preexisting issues and I feel that I

have a leg to stand on when it comes to denying vaccinations for a while

until they can be made safe.

Best of Luck to you and your family.

Jayne

[Guest guest]

Anne,

Carly had Kawasaki's in August. She had been complaining of stomach pain

over a period of about 1 week (on and off). I thought it may be something

she was eating, so I took her off dairy products just in case. Then she

became listless and mopey, which is totally out of character for her. That's

when I realized that she probably had some kind of " bug " . Finally, she woke

up with a severe diaper rash (which was very unusual seeing as she is potty

trained and only wears a diaper to bed at night-not enough time to get such a

horrible rash). About the same time we discovered the rash, she starting

vomitting, not eating or drinking, and had a fever that continued to rise and

then break. We took her to the doctor when the fever returned on the third

day and they tested her urine. She was diagnosed with a UTI and sent home

with amoxicillin. On day four, she got a rash over her entire body and her

feet and hands began to swell. Her lips were chapped and her eyes were

begining to get more and more bloodshot. I thought it was because of the

fever or because of lack of sleep from being uncomfortable. Her diaper rash

got worse and nothing was bringing the fever down. I called the pediatrician

and he said that if she got too dehydrated bring her into ER. We took her in

on the firth day because I stopped the antibiotic (because I thought she was

having an adverse reaction to it) and I could not get the fever under

control. She was diagnosed with KD and sent to ICU for 5 days. Thank God

that we caught it then. KD is very agressive as it causes swelling

throughout the internal organs and ultimately attacks the heart. Many

children who go for 10 days or more without a diagnosis and treatment, either

die of heart attacks or develop terrible anyeurisms that constantly have to

be monitored. Thanks to the early treatment she received, she is totally in

the clear right now.

The funny thing about it is that if she had not been in the hospital with KD,

we would not have known that she also has and atrial septal defect in her

heart. I think God works in mysterious ways, as this could have been fatal

in her adult years if we did not opt for surgery while she is young. She has

a seizure disorder and if she were to have a stroke, it could have been

misconstrued as a seizure and gone undiagnosed and untreated.

She is doing great now though. She is such an angel (my little Shirley

Temple!)

Thanks for asking about KD. I think it's so important that people know what

to look for in their own children. Especially since the cause is still

unknown.

Take care.

Jayne

[Guest guest]

I just think that everyone is entitled to their own opinion, however wrong or

indifferent it may be! I don't agree, but I think all parents have the best

interest of their child at heart. I love you mom.

Talk to you soon.

[Guest guest]

At 10:16 AM 10/27/2000 -0400, you wrote:

>Thanks for asking about KD. I think it's so important that people know what

>to look for in their own children. Especially since the cause is still

>unknown.

Thanks for sharing her story with us. You are right that it is not

understood very well. When i was working as a staff ped nurse we had a few

cases and treated with IVIG in high doses. Did they treat your daughter

with IVIG? I have not staffed in a few years so for all I know this is not

how they treat anymore.

I am glad that they were able to detect her cardiac condition and that you

will be able to pro actively treat this now rather than finding it out in

an emergency type situation. You are right that God works in mysterious

ways.

Have a good day

Anne

[Guest guest]

Anne,

Yes they treated her with IVIG. At first, she got chills and her temp

dropped considerably so they had to ease off and give it to her at a much

lower dose over a longer period. We were praying big time that her body

wouldn't reject it, and it didn't after all. She is doing so well now.

Thank God for modern medicine. We can't cure everything yet, but what we can

do in some cases is almost miraculous. Our daughter is living proof. We

really thought that we were going to lose her.

Thanks for the questions and concern..

Talk to you soon!!!

Jayne (Carly and Madelyn's mom)