Re: mastocytosis connection to vaccines?

[Guest guest]

Tia, I don't have much time now, but I will post more on this. Yes, I believe

there is a vaccine connection, but try to convince the Moms of these kids! On

another list there is a Mom whose son has Masto and Autism. There is a

website run by some Moms, also a support list, but this Mom with the Autistic

son is the only one that believes there is a connection she is also very

knowledgeable. Let me know if your friend would like her email addy.

http://www.mastokids.org/index.php?x=credits.php

[Guest guest]

Tia, I don't have much time now, but I will post more on this. Yes, I

believe there is a vaccine connection, but try to convince the Moms

of these kids! On another list there is a Mom whose son has Masto and

Autism. There is a website run by some Moms, also a support list, but

this Mom with the Autistic son is the only one that believes there is

a connection, she is also very knowledgeable. Let me know if your

friend would like her email addy.

http://www.mastokids.org/index.php?x=credits.php

> Can anyone give me any information on the connection between

mastocytosis and vaccines. A mom on a group that I'm on has a son

that developed this around 3 mos old, after his first round of shots

(not so coincidentally I'm sure). Her doc tried to tell her the

spots he developed were bugbites, but after her insistence on a

dermatology referral he was diagnosed with mastocytosis (claiming it

is congenital). " if i touch one of his spots it hives up (this is

the reason i switched to cloth) or if he gets a bee sting it could be

> anaphylactic, no HOT or COLD water, red dye, prone to food

allergies, etc. "

>

> He is now 1.5 yo and she's questioning further vaxes (he's " due "

for some) and I'm trying to give her what information I can, but I've

come up dry on this one.

>

> TIA,

>

> ~ danielle

> ps. I lost my harddrive this week so if I ask for a lot of links

or redundant information, that's why - I backed up what I could

before I reformatted, but alot of my saved e-mails and links are

gone :-(

[Guest guest]

Sorry le, I was in such a hurry, I saw TIA, so that's what I

called you. Guess everyone can tell I'm having a very busy day

today.

> Can anyone give me any information on the connection between

mastocytosis and vaccines. A mom on a group that I'm on has a son

that developed this around 3 mos old, after his first round of shots

(not so coincidentally I'm sure). Her doc tried to tell her the

spots he developed were bugbites, but after her insistence on a

dermatology referral he was diagnosed with mastocytosis (claiming it

is congenital). " if i touch one of his spots it hives up (this is

the reason i switched to cloth) or if he gets a bee sting it could be

> anaphylactic, no HOT or COLD water, red dye, prone to food

allergies, etc. "

>

> He is now 1.5 yo and she's questioning further vaxes (he's " due "

for some) and I'm trying to give her what information I can, but I've

come up dry on this one.

>

> TIA,

>

> ~ danielle

> ps. I lost my harddrive this week so if I ask for a lot of links

or redundant information, that's why - I backed up what I could

before I reformatted, but alot of my saved e-mails and links are

gone :-(

[Guest guest]

Here is an article that this Masto Mom was interviewed for. The

article was on Autism, no mention of Masto. The Moms name is Jane

Eilers.

Cover Story

The autism mystery

By Tilka

Parents ask scary questions about the safety of everyday vaccines.

Nick Eilers has been quiet today. That isn't always the case.

" He hasn't even come down to get me, " says his mother Jane

Eilers. " That's pretty good for him. "

Upstairs in the Eilerses' Ankeny home, 8-year-old Nick is with a

tutor, learning about time, money, grammar and reading comprehension.

It might be the end of summer, but he's busy developing and retaining

basic skills so he won't be too far behind the other kids when he

goes back to school. Nick might squawk when he doesn't want to do

something, but it's not your typical temper tantrum.

Nick has pervasive developmental disorder - which falls into a

category commonly known as autism. A growing number of children are

being diagnosed with the disease, and parents like Eilers fear that a

simple childhood vaccination may be the cause of the lifelong

disorder.

The tall, stocky blond boy with glasses comes downstairs and fixates

on the television his brothers are watching. Not an uncommon thing

for a young boy to do, especially when " the Tank Engine " is

on.

Eilers gives Nick a countdown from five before she turns off the TV.

If she doesn't warn him, he might throw a fit. Nick is particular

about his environment, and he becomes upset if things don't go as

planned. His parents started wondering if something was wrong before

his first birthday.

" He was very complacent, " Eilers explains. " He would sit for hours

content. He didn't mind being held, but he didn't seek it out either.

We kept asking the doctor, 'Does your child do that?' and we always

heard, 'No.' "

Nick was put into the special infant program through the Des Moines

school system, where a therapist would work with him a couple of

times a week. Due to a variety of other problems, the diagnosis of

PDD was finally settled on when he was 4 years old.

" He became a danger to our youngest, " Eilers says. " He hated it when

Blake cried. He'd pull him by the feet to get him out of the crib. He

just had this huge sensory overload. The crying hurt him. "

Autism is a spectrum disorder, meaning it manifests itself in a

variety of symptoms and behavior. There are degrees or levels of

ability in the autistic spectrum, and Nick is considered high

functioning. He is verbal and learning to read, and he makes eye

contact and can follow directions. When a camera is pointed at him,

he smiles and directs everyone else to say " cheese " with him.

The symptoms vary for each person, and may include repetitive

motions, trouble following directions, lack of eye contact, hurting

oneself, difficulty interacting with others or not wanting to be

touched. Many describe autistic people as being locked in their own

world. Some appear deaf because they don't acknowledge people or

noises, though their hearing tests at normal levels. When overloaded

with sensory information, some throw tantrums or become hyperactive.

In the struggle to do all they can for their children, many parents

can't help wondering how their children developed this disorder.

There is no definitive answer to that question. A variety of factors

may come into play, including environmental factors or birth trauma.

But some parents fear vaccines are to blame. Though the idea hasn't

been proven, recent research has presented evidence supporting that

theory. The possibility of risk has angered parents - and they're

demanding answers from the medical profession.

The vaccine link

Research published in 1998 by Wakefield, a doctor in England,

suggests that the measles, mumps, rubella (MMR) vaccine may be partly

responsible for regressive onset autism, a type of autism that

suddenly occurs after a child has been developing normally.

" She was perfectly normal, and at about 18 months, we started losing

her, " says Dana Halvorson, a northern Iowa mother whose daughter

Robyn was diagnosed with regressive autism. " By age 2, everyone

thought she was deaf. "

In his research, Wakefield found that some autistic children with

gastrointestinal problems had a characteristic inflammatory disease

of their intestine. When biopsies were taken of the sores, he found

the measles virus. In recent testimony before the U.S. House

Committee on Government Reform, Wakefield said, " This disease may be

the source of toxic damage to the brain. "

The Centers for Disease Control doesn't buy it. Its Wed site

says " Current scientific evidence does not show that MMR vaccine, or

any combination of vaccines, causes the development of autism,

including regressive forms of autism. "

Dr. Gaffney, an associate professor of psychiatry in the autism

and developmental disabilities clinic at the University of Iowa,

agrees. " They thought that MMR was involved, but that appears not to

be true, according to the research that's come out recently. "

But others look to another recent study led by Dr. Vijendra Singh of

Utah State University, which analyzed blood samples from autistic and

non-autistic children and found a significant increase in the level

of MMR antibodies and an unusual anti-measles response in the

majority of the autistic children.

The antibodies attack the brain by targeting the basic building

blocks of myelin, the insulating sheath that covers nerve fibers. Dr.

Singh suggests that this autoimmune response, in which the body

attacks itself, may be the root cause of autism.

If a close family member has an autoimmune disorder such as diabetes,

rheumatoid arthritis, lupus or multiple sclerosis, the chances are

greater for autism in that family.

" My mom has rheumatoid arthritis and my dad is diabetic, so that

could have maybe been a red flag for us, " says Halvorson. " Maybe we

should have handled our kids' vaccinations differently. "

Another vaccine issue involves thimerosal, an additive that was used

in a number of vaccines, including those for hepatitis B, diptheria,

tetanus and pertussis, and chicken pox. Thimerosol contains 50

percent ethyl mercury - an amount much higher than levels recommended

by the Food and Drug Administration. It was taken out of dog vaccines

in 1992, but remained in children's vaccines until last year and was

only removed as " a precautionary measure, " according to the CDC,

which says no harmful effects have been reported from thimerosal at

the doses used in vaccines, except for minor reactions.

" But if you look up what you see with mercury toxicity and line it up

against autism, there are a lot of similarities, " Eilers says.

Many autistic children have higher than normal levels of heavy metals

in their bloodstreams. " The interesting thing is that if you look at

the ingredients of the vaccine, they're loaded with (heavy metals), "

says Halvorson.

Halvorson theorizes her daughter might have been overexposed to

mercury due to a filling Halvorson had replaced while she was

pregnant. Her other three children weren't exposed in that manner.

" My suspicion is that she might have already had some (mercury)

toxicity from the filling, and when she got the vaccine, it was too

much for her to handle, " she says.

But though vaccines are suspect in some circles, mainstream research

into vaccination issues isn't being done, according to Cedar Rapids

chiropractor Dr. W. Gene Cretsinger, who works with autistic children

to improve their nerve system processing.

" I know there's a concern that vaccines will be refused, " he

says. " The major issue is that no one knows what the effects of

vaccines are at the cellular level or neurological level...there is

an unwillingness from the medical community to look at those

consequences and look at those issues seriously. "

Rep. Dan Burton, an Indiana Republican who is Chairman of the

Committee on Government Reform and the grandfather of a child with

regressive onset autism, has championed legislation and hearings to

get more dollars for research and to speed along lawsuits for those

harmed by vaccines.

" Funding in basic and clinical research into autism needs to be

expanded dramatically, " he said in an April hearing. " We have an

epidemic on our hands, and we in Congress need to make sure that the

National Institute of Health and the CDC treat this condition like an

epidemic and put their efforts into doing several things: First, to

find out the causes of the epidemic. Second, to determine how to stop

the epidemic in its tracks. Third, to evaluate treatment options.

And, fourth, to look for a cure. "

He holds the CDC and the NIH partially responsible, tells his

colleagues that their flu shots contain mercury and chastises doctors

who ignore their patients' concerns.

" I might have been like so many pediatricians who discounted the

correlation between vaccination and the onset of fever, crying and

behavioral changes, " he said. " Because both of my grandchildren

suffered adverse reactions to vaccines, I could not ignore the

parents' pleas for help. I could not ignore their evidence. "

Biomedical concerns

Doctors have also begun to question treatment regimens. A textbook

case of autism is diagnosed when the patient is 2 to 4 years old.

Then the family works with a team of doctors and therapists,

including speech pathologists, occupational therapists, child

psychologists and sometimes chiropractors.

" It's the basis of good academic and educational support, and

medically we can treat some of the symptoms, " says Gaffney.

But other professionals like Grace Percival, a pediatric psychologist

with the Des Moines Pastoral Counseling Center, believe more can be

done. She gets angry as she talks about diet issues.

" I'm going to get in trouble for this, " Percival says. " But the

medical profession is not on board. They don't believe such an issue

exists, even though we have international research that says it

does. "

A number of autistic people have gastrointestinal problems, such as

diarrhea and food allergies.

" Soy is poison in my house, " says at an autism support

group meeting run by Percival. " When my son has soy, he will just

immediately collapse at the table. "

Though only limited research backs the theory, some parents of

autistic children are convinced vaccines have played a role in

damaging their children's digestive systems, creating an intolerance

for certain foods.

" It's all intertwined, " Percival explains to new support group

members. She looks at things holistically. If an autistic child is

acting out behaviorally, she wants to know what is in his diet that

might be processed incorrectly by his diseased intestine - which

might be damaged due to a vaccine - thus sending strange molecules

into the bloodstream. Some children won't eat because the foods their

parents unknowingly give them might be making them sick.

If you put casein, component of dairy products, into a damaged

digestive system, it might not break down completely. One of the

compounds formed during digestion acts like a drug, stimulating

opiate receptors in the brain. " Taking a child off it is like

withdrawal like he's coming off heroin, " Percival says.

Scientist Jaak Panksepp proposed the idea of dietary change after he

observed that autistic children had many traits in common with people

addicted to opioid drugs. Addicts are often " in their own world, " and

exhibit behavior such as rocking; some have gastrointestinal

problems. Panksepp thought autistic children might have high levels

of opioids in their bodies.

The theory made sense to Halvorson and explained why her daughter had

dilated pupils and couldn't sit still.

" I needed more info, so I had an allergy test done and found out she

was allergic to soy, coconut, peanuts, mushrooms, mustard, etc., " she

says. " The bottom line is that there were some serious problems going

on with this child's gut. I was kind of glad because I finally had

proof there was something going on with our daughter that we could

help her with. "

Will anyone help?

One treatment that has been successful for a number of children

involves implementing a gluten-free, casein-free diet. Gluten is a

protein found in many starches that's similar to casein on the

molecular level.

Nick wasn't breaking those food compounds down. He was producing

antibodies to attack them - as if those foods were toxins, Eilers

says.

" Once we took him off those things, he was able to sit and focus, "

Eilers says. " We saw huge improvements in his behavior. "

If it might work, why not try it? But some Iowa families have run

into trouble when they ask about these treatments.

" We don't necessarily recommend that, " Gaffney says about dietary

changes. " If someone wants to maintain a healthy diet with vitamins,

I certainly don't disagree with that. On an individual basis, some

families might find (gluten-free diets) effective, but I don't know

of any research at this point (to prove that). "

Dr. Took, a child psychiatrist at Blank Children's Hospital,

agrees. " There is not any scientific research to support diet

change, " he says.

Instead, doctors pointed Eilers toward prescription drugs.

" We were told don't do (the diet), " Eilers says. " We couldn't find

any support. Our doctor said, 'Lots of kids have those GI problems.

Pray for him and hope for the best.' Our psychiatrist said, 'Keep him

in the school program and give him Prozac and that's all you can do.' "

Many doctors advocate medication to improve some behavioral symptoms

of autism, such as rigidity and compulsions. " For those kinds of

problems, serotonin medicine can be helpful, " Gaffney says.

But according to Eilers, there were no tests that said there was a

serotonin problem with Nick. " I want to see the data, " she says. " If

you can't show me why my son needs Prozac, then he's not getting it. "

Parents like Eilers and Halvorson are angry that the medical

community is ignoring their pleas to look at vaccines and to try new

treatments.

" I specifically asked (the doctors) about MMR, and they said, 'Forget

it. Take her home and put her in special ed.' and that wasn't very

encouraging, " Halvorson says. " They say it's a coincidence and that's

when you start noticing the symptoms, but how many coincidences can

you have? " Eilers asks.

" They aren't on board with biomedical intervention, " Halvorson

says. " I don't know if (doctors are) afraid of getting sued or what,

but they need to change because how many kids haven't been getting

help because we haven't been told about it from the experts? We're

supposed to be able to trust them, and I came home and found out

about it through a magazine article. There's something wrong with

that. That's not right. "

Took says that it's important for parents to remember that the cause

of autism is often unknown and there is no cure - and certainly no

miracle cure.

" The sad part is, I think that parents want so much to do something,

and many times they're in a position to be taken advantage of by

folks who are selling this treatment or that that has no basis, " he

says.

Looking to the future

Whether the vaccine theory is right or not, parents want more

research. They want to know if substances they're injecting into

their babies could be at fault.

" The response we get is that they've never proven this, " says

Halvorson about the doctors she and other parents have spoken

with. " My response to that is that I don't see they've disproven it

either. I'm not comfortable putting any more immunizations into my

children, but everyone has to make their own decisions. I look at

everything, and I guess I need a lot more conclusive answers on this

before I'd give my kids any more immunizations. "

The medical community worries parents will refuse vaccinations,

leading to an increased risk for disease.

" You have to weigh the vaccination against the disease, " says Kris

Steinmetz, interim director of the Autism Society of Iowa. " We don't

want to say not to get vaccinations. We really don't have anything

substantial yet at all researchwise on that. "

That isn't the issue, says Dr. Jeff Bradstreet, founder of the

International Child Development Resource Center in Palm Bay, Fla.

Also a fellow of the American Academy of Family Practitioners, an

organization that works closely with the CDC and the American Academy

of Pediatrics in developing the current vaccine schedule, Bradstreet

says he isn't suggesting an anti-vaccine approach.

He argues that safe vaccines need to be used or created. For example,

single-dose vials used in Europe need no thimerosal.

At a time when autism levels are rising to epidemic status -

currently 1 in 250 children is diagnosed with the disease - Iowa

parents are struggling for help. The Autism Research Institute, an

organization formed by Dr. Bernard Rimland to further doctor

education about biological treatments is gaining support, but parents

say it's not enough. The organization maintains a list of

practitioners who are supportive of new treatments and further

research into autism. But Iowa isn't well-represented.

" There was only one (doctor) for Iowa and she actually has asked to

be removed from the list, " Halvorson says. Dr. Janet Cuhel, who is in

practice with Dr. Cretsinger, has just joined the list. But there are

multiple, sometimes even dozens of doctors in other states.

Wisconsin, for example, has eight doctors signed up.

Until they get answers and support, Iowa parents are at a loss about

what to do for their autistic children. They just want their doctors

to listen.

" This is how medicine works, " Halvoson says. " It took them 100 years

to believe bacteria exists. They're very slow to accept change, so

it'll take some time, and it might take a lot of newspaper articles,

but we might get there eventually. "

> > Can anyone give me any information on the connection between

> mastocytosis and vaccines.