update

September 18, 2002

Dear Melt,

You must have needed that rest when you slept through chat, it seems

like your rope has been stretched tooooooooooo long these last few

months! Take those naps when you need them, we love you.

I will be in Vegas at The Orleans sometime on (10/8) Tuesday afternoon.

We are driving as my legs are bruised and hurt to bad to cramp into an

airline seat. I can hardly wait. I am a little leery of those cameras,

the prednisone has completely stolen my " girlish figure " as my mother in

law used to call it, lol, it is farrrrrrrrr from that now. I don't

care, I am showing up as I am, it will be hard to miss me, lol.

My arms and hands also have some involuntary shaking, perhaps people

will just think we are excited! Good luck with the neurologist, they

sure have some good things to try for the shaking. Louise.

idylpines wrote:

>

> Hi all; I am so bad to say I slept right through chat today. I miss

> chats and for the past few seems something always comes up or I just

> forget.

> , let me say thank you for your loving self and am so grateful

> that Bridget has you to call. I agree with her going to a shelter

> but either way a card and love is going to her today.

> Everyone's questions seem to be addressed I read so I will just

> update a little of myself.

> The tremors are better with a medication called Carpadopa/Levodopa.

> I have an appt. with the Neurologist on Sept 30th. I am trying hard

> not to be sad that I don't feel a whole lot better but I'm staying as

> busy as I can on projects and am SOOOOOOO looking forward to Vegas

> and sharing lots of hugs. I will go to the Orlean's Tues morning to

> drop off some raffle goodies and then go see my Dad for the afternoon

> and night. Wed we plan on the whole day & eve in town. My Dad and

> will be joining for dinner. You shall know me right away

> because I will probably be the one crying for joy as my emotional

> feelers seem to be at high pitch these days.

> I read all the posts and send my love to all for each and every one I

> read. Till soon, Smiley Melt

>

October 4, 2002

Dear ,

I'm sorry you are having so many problems with your doctor. There is nothing

worse than expecting to have your pain taken care of and then finding out

that isn't going to happen (even worse when it is the doc's negligence by not

having your medicine). Would he be able to send you to the hospital for it?

I'm so glad to hear that you are going to look for a new doctor. Although it

is probably so hard to have to drive so far, at least you will know that you

will get relief. Maybe -- does one of the doctors in Seattle know anyone in

AK? (You probably already checked this.)

You also sound positive about your current work situation and about starting

something on-line. I worked from home for the past 8 years and it made such

a difference in my life -- just the flexibility, being able to work when I

felt well, not having to worry about " clocking in, etc. " I wish you lots of

luck with it.

Feel good and hang in there! Love,

October 21, 2002

Hi robert; I use the name Pattymelt. I haven't had a chance to say

welcome so a big Welcome.

It's always good to hear when someone is feeling a bit better. The

rash that some get with Still's is not always the same or in the same

place. Sounds like you have a good doctor relationship going there

and count yourself lucky for that. I'm not saying most don't, it is

just one major thing that makes this disease a tad easier to live

with. Best of luck with the Prednisone and we are here any time you

need a friend. Till soon, Melt

> hello all been two weeks diagnosed so far happy to say i am feeling

better slowly.

November 9, 2002

Hi Friends,

I'm finally getting around to posting. I've been reading all the

messages & am here in spirit every day! Last Saturday I had a car accident

(minor). Well, I say minor because no one was hurt, but there was a fair

bit of damage to the vehicles. was with me & she was in the

passenger's seat (where she always sits) & it was her door that was hit! It

was a close call & I thank God for the warning. I know that I need to SLOW

DOWN (I don't mean literally as we were going very slowly when we were hit),

but I just try to squeeze too much into my days & I was rushing when this

happened & neglected to check to my right, .... It was my fault, so I've

been dealing with the guilt, etc. My DH was SO understanding - I'm really

blessed to have him. Anyway, God has entrusted us with our children's lives

& sometimes it takes a close call like this to put things into perspective.

As you all heard, Beth & family & our family had a wonderful

week-end about a month ago in Windsor, Ontario. It was so great to meet her

& to connect totally on so many levels. The most amazing to me were the few

phrases that we use with our kids that were identical - " Hands down., Good

listening., Chew & swallow. " , etc....What a blessing this list is. Thanks,

again, Joan.

Leah - So wonderful to have you back with us. You are truly an inspiration

to us all! I wasn't aware of how serious your surgery was. So glad to hear

you're on the mend. I tried to e-mail you privately about a month ago, but

it wouldn't go through(that's when you were disirable dimples - not to say

that your dimples aren't still desirable!!!). Anyway, I have been thinking

about you & praying for you & your children.

Gail - Thanks again for the musical books. has had many hrs. of

enjoyment from them. I'm glad to hear that Errick is home & I hope your DH

is doing better.

Irma - Yes, I can get batteries for the books at our local dollar store.

They run out pretty fast, but it doesn't hurt so much when you just pay $1

for new ones!!! Hope you & are doing well. We miss your regular

posts.

Charlyne - I, too, was appalled at how you were spoken to in church. You

are a fabulous Mom & such a fine example of the kind of adocate we all

strive to be for our kids. I think it's fantastic that you had the

forethought to start your business so that Zeb can have a place to work one

day. Also, I pray that all goes well for your daughter, her baby & your

whole family as you adjust to this new little life among you. And with

Sara's Elie to help with the rocking, you're all set!!!

Laurie - I've enjoyed reading all about Mic & the progress you've been

making. You are clearly very dedicated to finding solutions & it's paying

off!!! Could you explain to us what you mean by " eye-cutting? " Take care &

continue to enjoy that sweetie of yours.

Donna(PA) - What a busy traveller you are this month! I'm envious! Happy

travels & continued prayers for you & yours. How's doing these days?

Joan - I totally agree with Beth & Gail in their responses to your

question about how support groups can better support us with dual dx.

Respite is a big area of need for us & the families near us. There just

seem to be so few people (caregivers) trained & dedicated enough to work

lovingly & effectively with our kids. In our area we have started a

spin-off group from our local DS support graoup. We call it DS Plus & it's

for fmailies of kids with more than the DS dx. We have about 8 families who

mostly have DS/ASD. Some have DS/OCD or DS/Tourette's or (like us) DS with

a severe or profound cognitive delay & therefore no second dx, but clearly

lots of issues that typical DS families don't have. Our spin-off group

meets in one of our homes or at a local coffee/donut shop & we just share,

vent, listen, etc. It's really great. Maybe other communities might

consider this way to go for support.

Beth - I'd LOVE to come to the conference in Columbus, but it won't be

possible. We're looking forward to your report from the TASH conference.

I think about you often & when I read your posts I feel so privileged to

have met you!

Now, just a few words about . For the new families, Steph is 15 is

cognitively 14-18 months & has many challenges - PICA, leukemia (in

remission), menstrual issues (is on depo-provera), etc...Lately she's been

doing really well at school - walking better, less aggressive, an

improvement in self-help skills (toiletting, tooth-brushing, hair- brushing,

etc.) She had tubes put into her ears in July & this has made a big

difference in her - she's happier, more attentive & is communicating with 3

signs in her private SLP sessions - e.g. " more book please " or " I want

book " etc. She's also stopped spitting at mealtimes - YEAH!!! Steph

continues to take horse back riding lessons & music therapy with much

enjoyment! Our , age 8 did a presentation at school in honour of

National Down Syndrome Week (Nov.1-7 in Canada). She did this last year,

too. I was so proud of her. This time I was able to be there & it was

great to see her speak with pride about her sister & about how all of us are

different & have gifts to bring to one another.

Well, I'd better sign off now & get some housework done.

Blessings to everyone & welcome to all the new families.

Love,

- Mom to ,15 & ,8

- from Waterloo, Ontario, Canada (near Toronto)

November 11, 2002

In a message dated 11/9/02 1:09:37 PM Eastern Standard Time,

burnett@... writes:

> I know that I need to SLOW

> DOWN (I don't mean literally as we were going very slowly when we were hit),

> but I just try to squeeze too much into my days & I was rushing when this

> happened & neglected to check to my right, .... It was my fault, so I've

> been dealing with the guilt, etc. My DH was SO understanding - I'm really

> blessed to have him

Hey, go easy on yourself dear; that's why we call them *accidents*....;-)

<<As you all heard, Beth & family & our family had a wonderful

week-end about a month ago in Windsor, Ontario. It was so great to meet her

& to connect totally on so many levels. The most amazing to me were the few

phrases that we use with our kids that were identical - " Hands down., Good

listening., Chew & swallow. " , etc....What a blessing this list is. Thanks,

again, Joan>>

Yes, and I think it's so cool you guys got together!!!!! You're giving me

incentive to get working on a date with Sara, Ginny and maybe Margaret if she

can. Gonna go check my calendar and nail these ladies down.

<<How's doing these days?>>

Aw, thanks for asking . She's doing well. Still in love with the

boyfriend and getting *A*'s in school. However, she is contemplating

taking a break, which tells me she is stressed (not good for someone with her

condition). Duff and I will support her whatever her decision, although the

boyfriend is giving her a hard time about it (hmmmmm, maybe we like this

guy....LOL)

<<She had tubes put into her ears in July & this has made a big

difference in her - she's happier, more attentive & is communicating with 3

signs in her private SLP sessions - e.g. " more book please " or " I want

book " etc. >>

WOW !!!! This is all great news on Steph!!!! And congrats to

for working so hard and doing a fabulous presentation. That's

awesome!!!! Tell us , how is the depo-provera working for Steph? I

have a little ways before I have to worry about this, but I feel it creeping

up on me...;-)

Thanks for the update; I always love reading your sweet/warm posts.

Donna

November 12, 2002

Hi ,

Sorry to hear about your accident. We are all guilty of trying to cram in too

much in our days. Cars can be repaired. You must be so pleased with Steph's

progress. Glad she is doing well and has a good sister. We are still waiting

for the baby, so far so good. Cait is still having lots of preterm labor

but...I am ready to send her to Elie's house.

Charlyne

Mom to Zeb 9 DS/OCD ?

November 23, 2002

Hi, . I'm glad your rheumy is on top of your case! What kind of

infection in your head does he think you have? (did I get that right?!?!)

And, unfortunately, I've heard several times recently of docs who won't take

Medicare or Medicaid...don't they have to? I hope you are healed quickly!!

Take care and sleep well. love,

November 24, 2002

Hi and all Stilligans,

No, doctors do not HAVE to take medicare and/or medicaid. What is

mandated is the cost of medicaid/medicare services. Most ethical

doctors do take a certain percentage of their case load in medicare

and/or medicaid and then have to say no to others who call for

appointments. Those quotas usually fill up quickly because many docs to

not do that.

Ooohhhhhhhhh sorry, I feel a rant coming on here......

This issue is something I feel is importuned to champion. There are

many opportunities for all of us to lobby state and federal legislators

and regulatory boards concerning prices paid for medicaid/medicare

services, which are notoriously low. Often times reimbursement does not

even covering the cost of the care, especially dental services and we

all know that our private insurance payments are artificially raised to

cover losses at hospitals and other agencies who ARE mandated to cover

indigent service and medicare/medicaid

While we are healthy contributing members of society it is easy to

begrudge taxes for these services! But we all age and many folks have

debilitating illnesses or employment that does not cover health

insurance. A wonderful country such as ours should be able to cover

basic medical needs for ALL our people and it is shameful that we do not

have a better system.I know there are many pros and cons concerning

socialized medicine but through voting and lobbying legislators and each

of use becoming activists, a country like ours should be able to find a

system that works.

I hope this may serve as a reminder that when any of us has an

opportunity to participate in our legislating process concerning health

issues we put it to good use! I hope I have not offended anyone, this

is an advocacy area I worked in for the State of Utah before Stills

Disease took it's toll on me.

Wishing you all a good week and happy Thanksgiving, with love and care,

Louise.

zev@... wrote:

>

> Hi, . I'm glad your rheumy is on top of your case! What kind

> of

> infection in your head does he think you have? (did I get that

> right?!?!)

> And, unfortunately, I've heard several times recently of docs who

> won't take

> Medicare or Medicaid...don't they have to? I hope you are healed

> quickly!!

> Take care and sleep well. love,

>

November 27, 2002

Thanks to all about the legs. No, I checked right away and there was no heat

or swelling in the joints. (Sandi, she's not on any meds right now) Maybe it

was a prelude to today's probable virus. She has complained of a headache a

couple times in the last couple days, then today had the joint pain and

headache in the a.m., a stuffy nose & sore throat at dinner time followed a

half hour later by a 102.6 rectal temp. Kate (2 mo. old and breastfeeding)

had 100 rectal this afternoon so she's faring better than her big sister.

They were with their 4 yr old cousin on Sunday who sneezed right in Kate's

face and was also wiping a runny nose (which nobody had noticed before we

came over of course), so I'm betting that's where it's from.

Talked to the ped and if gets another fever like that overnight or in

the a.m. she goes in for a CBC in the morning -- Happy Thanksgiving! And of

course the office (they have 2) that's open tomorrow is the one that's

farthest away. If she has a left shift we have to go to the ER for the blood

culture because on holidays the lab doesn't pick up from the ped's office.

So I've been cleaning and chopping veggies here at midnight in case I have no

time to do that tomorrow to prepare the veggies-n-dip tray I was asked to

bring for Thanksgiving dinner. Of course Kate decided to nurse nonstop

tonight so I had to put her in the babysling and nurse her while getting my

stuff done.

BUT there are many things I'm thankful for, one of which is that we have not

been to the ER in over a YEAR!!! She has had to have a couple of CBCs during

that time, but the fevers either happened during office hours or we felt

comfortable waiting until the morning -- so we had a simple finger stick at

the peds instead of the whole ER experience.

Sandi: I'm so glad doesn't have to have the surgery yet. Wooo hoo!!

(mom to Kate, born 9/19/02; and , age 3-3/4 -- currently has

polysaccharide antibody def, previously had transient IgG, IgA, t-cell &

other defs)

December 2, 2002

I was released a couple of weeks ago to prove that immunizations had nothing to

do with autism, in fact more autistics occured in the group that was not

immunized. I am in special ed and it seems like this rumor will never die. I

wish I could blame someone, but current evidence points to me. A stray gene

from both parents leads to Autism.

Christy

December 2, 2002

Oops, thermersol should be thimerosal. Luckily, I didn't have to spell it for

the doctor, LOL. Pati

Update

DO OTHER PEOPLE RUN INTO THIS STUFF:

I just got off the phone with is' doctor and I was asking him a few

questions. He had wanted is to get a flu shot and I was scared because I've

been reading all this stuff about Mercury poisening and he acted annoyed when I

expressed my concerns. He said, well I lined up all my grandchildren on

Thanksgiving and gave it to them before they had Turkey. Then I asked him if a

supplement of Zinc would be a safe alternative because that was recommended to

me. He said NO! He said not to give her Zinc and that Zinc deficiencies are

rare and too much could be harmful. Then I asked him if it would be appropriate

for a Doctor to make specific recommendations about the amount of speech and OT

therapy a child should receive because currently is is only receiving 1 hour

per week of each. He said, yes, I should ask the dev. ped. to do that but I

need to recognize that there are limited resources and if they give is an

additional hour of therapy then they are taking it from another child. Needless

to say, it was not a good conversation. He either made me feel stupid or

selfish! Just felt like venting! Pati

P.S. I also asked him about the MMR and if it had thermersol in it. And he

said he was 99% sure that the MMR never had thermersol in it because it is a

live vaccine. Is that true? I thought I had read that was the main vaccine

with a problem. The reason I want to know is I have an 8 month old who will be

subject to it in the future and I need to have my facts straight.

Unfortunately, my printer is broken right now, so when I read stuff I can't

print it out.

December 2, 2002

Pat,

IF the ped will give you a rx, and IF your insurance co. will cover OT or

SLP - then get a private SLP or OT.

Here are my reasons:

1) The school will try to keep 'medical needs' out of the 'bubble' of school

needs. I like to 'think in metaphors' - guess it's kinda like going to the

school nurse & saying you want your child to get the flu vaccine. The

school nurse would say 'fine - go to your ped & get it - it's not a 'school

issue' " . (since someone just wrote about the flu shot - figured I'd use that

example)

2)If your insurance will cover it & you do it privately, than a) you don't

have to fight the school district for it and you'll probably get a longer

session with a private OT or SLP and c) the private OT/SLP may be ( &

probably are) MUCH better than the ones hired by the school district.

3) try to book these private therapists after school. Assuming they do

'wonders' with your child - then have them attend your IEP to give

recommendations (or if the school OT will speak w/ the private OT - then

that'll save you $$ you'd have to pay the private therapists to attend IEPs.

4) Assuming you child does well w/ a private therapist/s - video-tape a

session/s so the school therapists can 'see' that the private therapists are

doing.

I guess your 1st step is finding out if your insurance will cover it.

Good luck

Mona

Update

DO OTHER PEOPLE RUN INTO THIS STUFF:

I just got off the phone with is' doctor and I was asking him a few

questions. He had wanted is to get a flu shot and I was scared because

I've been reading all this stuff about Mercury poisening and he acted

annoyed when I expressed my concerns. He said, well I lined up all my

grandchildren on Thanksgiving and gave it to them before they had Turkey.

Then I asked him if a supplement of Zinc would be a safe alternative because

that was recommended to me. He said NO! He said not to give her Zinc and

that Zinc deficiencies are rare and too much could be harmful. Then I asked

him if it would be appropriate for a Doctor to make specific recommendations

about the amount of speech and OT therapy a child should receive because

currently is is only receiving 1 hour per week of each. He said, yes, I

should ask the dev. ped. to do that but I need to recognize that there are

limited resources and if they give is an additional hour of therapy then

they are taking it from another child. Needless to say, it was not a good

conversation. He either made me feel stupid or selfish! Just felt like

venting! Pati

P.S. I also asked him about the MMR and if it had thermersol in it. And he

said he was 99% sure that the MMR never had thermersol in it because it is a

live vaccine. Is that true? I thought I had read that was the main vaccine

with a problem. The reason I want to know is I have an 8 month old who will

be subject to it in the future and I need to have my facts straight.

Unfortunately, my printer is broken right now, so when I read stuff I can't

print it out.

December 2, 2002

Are you referring to the show on Dateline? Alot of people dispute the recent

findings reported on Dateline as being bias and not related to all vaccines.

I'm just wondering what has made you so convinced. There must be some reason

they are suddenly removing thimerosal from vaccines. Just my thoughts. You may

want to read this article. Pati

The Not-So-Crackpot Autism Theory

By ARTHUR ALLEN

Neal Halsey's life was dedicated to promoting vaccination. In June 1999,

the s Hopkins pediatrician and scholar had completed a decade of

service on the influential committees that decide which inoculations

will be jabbed into the arms and thighs and buttocks of eight million

American children each year. At the urging of Halsey and others, the

number of vaccines mandated for children under 2 in the 90's soared to

20, from 8. Kids were healthier for it, according to him. These simple,

safe injections against hepatitis B and germs like haemophilus bacteria

would help thousands grow up free of diseases like meningitis and liver

cancer.

Halsey's view, however, was not shared by a small but vocal faction of

parents who questioned whether all these shots did more harm than good.

While many of the childhood infections that vaccines were designed to

prevent -- among them diphtheria, mumps, chickenpox and polio -- seemed

to be either antique or innocuous, serious chronic diseases like asthma,

juvenile diabetes and autism were on the rise. And on the Internet,

especially, a growing number of self-styled health activists blamed

vaccines for these increases.

Like all medical interventions, vaccines sometimes cause adverse

reactions. But unlike pills, vaccines come packaged with high

expectations, which make them particularly vulnerable to public

criticism. Vaccines don't cure people, and they are administered to

healthy children, which gives them few opportunities for good press.

When they work, nothing happens. When vaccinated children become ill,

their parents are grief-stricken and often enraged, even if vaccines

aren't proved to be at fault. All of this puts public-health advocates

like Halsey on the defensive. Most attacks on vaccines, they say, are

based on hysteria, bad science and dubious politics.

Halsey, 57, has green eyes, a white beard that makes him look like a

ship's captain and an air of careful authority. As chairman of the

American Academy of Pediatrics committee on infectious diseases from

1995 through June 1999, he often appeared in the media administering

calm reassurance. ''Many of the allegations against vaccines,'' Halsey

said in one interview, ''are based on unproven hypotheses and causal

associations with little evidence.''

And then suddenly in June 1999, during a visit to the Food and Drug

Administration, a squall appeared on the horizon of Halsey's confidence.

Halsey attended a meeting to discuss thimerosal, a mercury-containing

preservative that at the time was being used in several vaccines --

including the hepatitis B shot that Halsey had fought so hard to have

administered to American babies. By the time the dust kicked up in that

meeting had settled, Halsey would be forced to reckon with the

hypothesis that thimerosal had damaged the brains of immunized infants

and may have contributed to the unexplained explosion in the number of

cases of autism being diagnosed in children.

That Halsey was willing even to entertain this possibility enraged some

of his fellow vaccinologists, who couldn't fathom how a doctor who had

spent so much energy dismantling the arguments of people who attacked

vaccines could now be changing sides. But to Halsey's mind, his actions

were perfectly consistent: he was simply working from the data. And the

numbers deeply troubled him. ''From the beginning, I saw thimerosal as

something different,'' he says. ''It was the first strong evidence of a

causal association with neurological impairment. I was very concerned.''

The investigation into mercury vaccines was instigated in 1997 by

Representative Pallone Jr., a New Jersey Democrat whose district

includes a string of shore towns where mercury in fish is one of many

environmental concerns. Pallone, who had been pressing the government to

reevaluate its overall guidelines on mercury toxicity, attached an

amendment to an F.D.A. bill requiring the agency to inventory all

mercury contained in licensed drugs and vaccines.

The job of adding up the amount of mercury in vaccines and assessing its

risk fell to Ball, an F.D.A. scientist, and two F.D.A.

pediatricians, Ball, 's wife, and R. Pratt.

Thimerosal, which is 50 percent ethyl mercury by weight, had been used

as a vaccine preservative since the 1930's in the

diphtheria-tetanus-pertussis shot, known as D.T.P., and it was later

added to some vaccines for hepatitis B and haemophilus bacteria, which

by the early 1990's had become routine immunizations for infants.

The F.D.A. team's conclusions were frightening. Vaccines added under

Halsey's watch had tripled the dose of mercury that infants got in their

first few months of life. As many as 30 million American children may

have been exposed to mercury in excess of Environmental Protection

Agency guidelines -- levels of mercury that, in theory, could have

killed enough brain cells to scramble thinking or hex behavior.

''My first reaction was simply disbelief, which was the reaction of

almost everybody involved in vaccines,'' Halsey says. ''In most vaccine

containers, thimerosal is listed as a mercury derivative, a hundredth of

a percent. And what I believed, and what everybody else believed, was

that it was truly a trace, a biologically insignificant amount. My

honest belief is that if the labels had had the mercury content in

micrograms, this would have been uncovered years ago. But the fact is,

no one did the calculation.''

Making matters worse, the latest science on mercury damage suggested

that even small amounts of organic mercury could do harm to the fetal

brain. Some of the federal safety guidelines on mercury were relaxed in

the 90's, even as the amount of mercury that children received in

vaccines increased. The more Halsey learned about these mercury studies,

the more he worried.

''My first concern was that it would harm the credibility of the

immunization program,'' he says. ''But gradually it came home to me that

maybe there was some real risk to the children.'' Mercury was turning

out to be like lead, which had been studied extensively in the homes of

the Baltimore poor during Halsey's tenure at Hopkins. ''As they got more

sophisticated at testing for lead, the safe level marched down and down,

and they continued to find subtle neurological impairment,'' Halsey

says. ''And that's almost exactly what happened with mercury.''

Halsey was beginning to think that it would be prudent to limit

thimerosal-containing vaccines and urge pediatricians to use

thimerosal-free shots when possible. But his decision inflamed some of

his peers. After all, although the thimerosal data was worrisome to

Halsey, the available science offered no clear proof that the

preservative posed a genuine danger to children when given in parts per

million. Moreover, it wasn't clear that there were enough

thimerosal-free vaccines available for diseases like pertussis and

hepatitis B. Should an unproven fear justify the cessation of a

procedure that protected children from proven dangers?

Halsey looked into the matter further and found only complexity. In the

medical literature, most cases of acute mercury poisoning result from

doses hundreds or thousands of times higher than what infants received

with thimerosal-laden vaccines. And although the thimerosal levels in

vaccines exceeded the E.P.A.'s guidelines for methyl mercury, thimerosal

contained ethyl mercury, a compound that behaves somewhat differently in

the body. The E.P.A. based its guidelines on a series of studies of 917

children born in 1987 in the Faeroe Islands, a windswept North Atlantic

archipelago, to women who ate methyl-mercury-tainted whale meat. The

Faeroes children, whose umbilical cord blood averaged four times the

E.P.A.'s daily ''safe'' dose -- which was 0.1 micrograms per kilo --

exhibited small but measurable neurological deficits seven years later.

They had slower reaction times and diminished attention spans and their

word choice and memorization were less keen than those of their

classmates who had been exposed to less mercury, according to Philippe

Grandjean, a Danish researcher who leads the continuing Faeroes study

and teaches at Boston University.

During most of the 90's, many American 6-month-olds received a total of

187.5 micrograms of ethyl mercury through vaccination. While the Faeroes

children were exposed to mercury as developing fetuses, and therefore

were more vulnerable than the vaccinated American infants, the American

babies included about 60,000 each year who had already been exposed to

high mercury levels because their mothers had eaten a lot of

contaminated fish. What's more, hundreds of thousands of Rh-negative

pregnant women and their unborn Rh-positive babies received additional

thimerosal each year through injections designed to keep the mothers'

immune systems from attacking the fetuses.

The Faeroes studies, though they dealt with methyl mercury, unnerved

Halsey. Other researchers were troubled, too. Lucier, a

toxicologist who led a 1998 White House review of mercury's dangers,

went so far as to say it was ''very likely'' that thimerosal had damaged

some children. There was precious little data to back up that precise

suspicion -- and little to dismiss it -- because of the lack of

toxicology research on ethyl mercury.

On July 7, 1999, at Halsey's urging, the American Academy of Pediatrics

and the Public Health Service released a statement urging vaccine

manufacturers to remove thimerosal as quickly as possible and advising

pediatricians to postpone giving most newborns the birth dose of the

hepatitis B vaccine. The decision, which helped to create vaccine

shortages and led some babies to become infected with hepatitis B,

outraged some senior vaccine experts. Walter Orenstein, director of the

National Immunization Program at the Centers for Disease Control and

Prevention, would charge that the rush to remove thimerosal-containing

vaccines was ''precipitous.'' Stanley Plotkin, a renowned vaccine

developer, said that it was fruitless to try to soothe vaccination

critics. ''If antivaccinationists did not have mercury, they would have

another issue,'' he said at one meeting. ''One cannot prevent them from

making hay regardless of whether the sun is shining or not.''

In Halsey's view, however, thimerosal wasn't simply a bone for rabid

vaccine opponents to gnaw on. In the middle of that hectic summer he

took a vacation in Maine. Canoeing on a lake, he came across posters

that advised fishermen to ''protect your children -- release your

catch.'' Halsey took that message to heart. If the government was

warning people against eating fish with mercury, he asked his

colleagues, ''does it make sense to allow it to be injected into

infants?''

Although other vaccinologists criticized Halsey, many of his colleagues

rallied around him. ''Neal put kids ahead of the vaccination program,

which was gutsy,'' says Lynn Goldman, a former E.P.A. official who has

been on the Hopkins faculty since 1999 and worked with Halsey on

thimerosal. ''It would have been easier for him to line up on the other

side.''

Few scientists believe that the spike in autism could have been caused

solely by the thimerosal in vaccines, but in October 2001, a

vaccine-safety committee at the starchy Institute of Medicine confirmed

that it was ''biologically plausible'' -- though by no means proved --

that thimerosal could be related to neurodevelopmental delays in some

children. The committee recommended that thimerosal be removed from

vaccines and called for extensive research to determine any damage it

had caused.

Halsey's fellow researchers were right about one thing. Antivaccine

advocates immediately seized upon the thimerosal theory, and Halsey

became something of an unwilling hero to the vaccine-safety advocates

with whom he had so often sparred. In fact, thousands of parents with

autistic children have responded to the Institute of Medicine report by

filing lawsuits. , who has won millions in toxic tort

settlements from pharmaceutical companies, was among the first lawyers

to sue vaccine manufacturers, on behalf of Mead, a 4-year-old

Portland, Ore., boy with autism. also filed a separate

class-action lawsuit with 's healthy older sister, Eleanor, as

lead plaintiff, demanding that vaccine makers also pay for studies to

determine thimerosal's effects on millions of children who might have

lower I.Q.'s or other less obvious signs of mercury poisoning. Past

studies have shown that mercury's effects vary tremendously from person

to person, presumably because of genetic differences in the body's

capacity to protect delicate organs from it.

''In order to win the Eleanor lawsuit you need to establish liability,

but I don't think that is going to be that hard,'' said in a

recent chat in his Portland office. ''Organic mercury is a very serious

neurotoxin.''

embodies the vaccine establishment's worst fear about Halsey's

course of action -- which is that taking the precautionary step of

eliminating thimerosal would be read as an admission of fault. ''The

agenda was set by the lawyers and the antivaccine activists,'' a source

close to a number of manufacturers complained to me. ''The scientists

responded to it scientifically, and that put them behind the eight ball

right away. You had Neal Halsey running around saying: 'We've got to do

something! We've got to show we're concerned!'''

Offit, a vaccinologist at the Children's Hospital of Philadelphia,

takes it a step further. ''In some instances I think full disclosure can

be harmful,'' he says. ''Is it safe to say there is zero risk with

thimerosal, when it is remotely possible that one child would get sick?

Well, since we say that mercury is a neurotoxin, we have to do

everything we can to get rid of it. But I would argue that removing

thimerosal didn't make vaccines safer -- it only made them perceptibly

safer.''

For Halsey, thimerosal injury is a possibility that must be addressed --

but by science, not by the courts. The scientific agenda, however, is

already deeply politicized. From the start, the C.D.C.'s efforts to

examine the possibility of thimerosal damage became snarled in acrimony.

Critics of the vaccination system don't trust the C.D.C., which monitors

evidence of adverse reactions to vaccines through the Vaccine Safety

Datalink, a computerized set of 7.5 million medical records. Safe Minds,

an advocacy group of parents who believe that their autistic children

were damaged by thimerosal, has used the Freedom of Information Act to

obtain documents showing that as early as December 1999 the C.D.C. had

reason to believe that thimerosal caused developmental delays in some

children. It was far from conclusive evidence, but vaccine critics

charged that the C.D.C. tried to play it down. One of those critics was

Dan Burton, a Republican congressman from Indiana, who says he firmly

believes that his grandson's autism is a result of vaccines. ''I'm so

ticked off about my grandson, and to think that the public-health people

have been circling the wagons to cover up the facts!'' Burton fumed at a

June hearing. ''Why, it just makes me want to vomit!''

What comes through in an examination of the documents uncovered by Safe

Minds is less a cover-up than an impression of scientists anxiously

watching over their shoulders as they work. One document, for example,

records comments made by Brent, a Philadelphia pediatrician who

served as a consultant for the thimerosal study. ''The medical-legal

findings in this study, causal or not, are horrendous,'' Brent said.

''If an allegation was made that a child's neurobehavioral findings were

caused by thimerosal-containing vaccines, you could readily find a junk

scientist who would support the claim with a reasonable degree of

certainty. But you will not find a scientist with any integrity who

would say the reverse with the data that is available. . . . So we are

in a bad position from the standpoint of defending any lawsuits if they

were initiated.''

More research is in the works. The C.D.C. is setting up a study of

neurodevelopmental effects based in part on the Faeroe Islands model.

The N.I.H. is financing studies of thimerosal metabolism in animals and

children. (An early University of Rochester study was reassuring: it

indicated that children eliminate thimerosal much more quickly than

expected.)

Clearly, a lot is riding on this research, and pressure is being brought

to bear on both sides. Can the vaccine authorities accept a positive

answer? Can the vaccine opponents accept a negative one? ''No one wants

to think that harm might have been done,'' Halsey says. ''I don't want

to think harm might have been done.''

American children still receive up to 20 vaccines in the first two years

of life. The first symptoms of autism often appear between the ages of

12 and 24 months. Most autism experts say that the two facts are

coincidental, but as a major California study recently confirmed, autism

is being diagnosed in numbers far higher than ever before, suggesting

that a nongenetic cause may be partly to blame. In some children, the

behavioral traits of autism present themselves along with physical

problems like sensory dysfunction and motor disorders that have rough

correlates in the mercury-poisoning literature. For some parents,

thimerosal provides a grand unifying theory that squarely points the

finger at the government and vaccine makers.

During much of the 20th-century, children suffered from an ailment

called pink disease, which caused peeling skin on the extremities as

well as regressive behavior. In 1948, a keen-eyed Cincinnati

pediatrician named f Warkany noticed a common risk factor in these

children: they had all been given teething powders containing calomel, a

mercury derivative. Only about 1 in 500 children whose parents gave them

calomel got pink disease -- suggesting that a constitutional

vulnerability to mercury was part of the clinical picture. Soon after

the powders were taken off the market, pink disease disappeared.

Autism is a global phenomenon that was first reported in America in

1943, long before the potential dangers of thimerosal vaccines were

raised. Removing the preservative won't -- even in the best case --

eliminate the illness. But scientists estimate that the current rate of

autism in its various forms might be as high as 1 in 500. If the autism

trend begins to recede now that thimerosal has been removed, it could

certainly suggest a cause. If it does decline, we might have Neal Halsey

to thank. If it doesn't, his colleagues in the vaccine establishment may

blame him for stoking an irrational protest from the public.

Halsey, who still heads the Hopkins Institute for Vaccine Safety, which

he was a founder of in 1997, is on the fence. ''I don't believe the

evidence is convincing now that there has definitely been harm done by

thimerosal,'' he says, absently stroking his balding head. But to keep

the vaccine program on a steady keel, Halsey says, the public-health

authorities simply must follow through with the studies and face the

consequences without flinching. If there is damage, he says, ''there

should be some kind of compensation, though I don't know how.'' He

pauses, and sighs. ''I empathize with families of children with these

disorders. How are you going to put dollar values on that?''

Arthur lives in Washington and is working on a history of

vaccination

RE: Update

I was released a couple of weeks ago to prove that immunizations had nothing to

do with autism, in fact more autistics occured in the group that was not

immunized. I am in special ed and it seems like this rumor will never die. I

wish I could blame someone, but current evidence points to me. A stray gene

from both parents leads to Autism.

Christy

December 2, 2002

Okay, I have another question. If you give the MMR separately wouldn't you be

giving them even more preservatives at a time? That is something that my dr is

concerned about. He understands about not attacking their immune systems with

all three at once but is thinking even more foreign things introduced.

Thoughts anyone?

Elaine

December 2, 2002

Another thought of mine is IF the vacs are not causing problems then why the

clause in the Homeland Security Bill about suing drug manufacturers and

something about stopping the cases already in court?

Elaine

December 2, 2002

I think the point is to space the 3 out, say 2 weeks apart so they're not

getting it all at once. If your doctor argues this then my opinion is

that he's aware of the higher cost of giving them separately. Some

insurance companies won't cover vaccines this way because of the expense.

December 2, 2002

He is leaving the final decision up to us. He is wondering though if the child

would not be getting even more preservative stuff in their bodies with

separating the three than giving one at once. And we have no insurance. We will

pay it out of our pocket IF we do them.

Elaine

If your doctor argues this then my opinion is

that he's aware of the higher cost of giving them separately. Some

insurance companies won't cover vaccines this way because of the expense.

December 3, 2002

Christy,

You were released to prove that immunizations and autism are not

connected? From what group? Seems that all the studies I have read

have not been able to pinpoint an exact cause for Autism. I am not

saying that it is the vaccines, but I think that more studies are

warranted. What I do not like is that I was never even aware that

there could be a link between the two. I try to be as well informed

as possible...but I had never heard of the possibility of a

connection until my daughter was diagnosed.

Maybe it is a certain gene, maybe a genetic fluke, maybe there are

external factors that contribute to the rise in Autism diagnoses. I

think that unless we keep ourselves open to several possibilities, we

may never come any closer to finding the cause, or a cure.

I do not mean this post in any but the most respectful of tones. I

just know that with my daughter's diagnosis came many unaswered

questions. I just want to make sure that no avenues to answes are

closed prematurely.

Respectfully,

Karyn

December 4, 2002

My thoughts exactly!! Pati

Re: Update

Another thought of mine is IF the vacs are not causing problems then why the

clause in the Homeland Security Bill about suing drug manufacturers and

something about stopping the cases already in court?

Elaine

December 4, 2002

I hadn't thought of that possibility, but good point, worth looking into too.

Pati

Re: Update

Okay, I have another question. If you give the MMR separately wouldn't you be

giving them even more preservatives at a time? That is something that my dr is

concerned about. He understands about not attacking their immune systems with

all three at once but is thinking even more foreign things introduced.

Thoughts anyone?

Elaine

December 4, 2002

Thanks Mona. I have a feeling my insurance won't cover it, but I will check

into it. Pati