Re: Introducing myself and our vaccine-injured kids

[Guest guest]

Welcome to our group. Have you read Children with Starving s by J. McCandless?

Kath in VA************************************** See what's free at http://www.aol.com.

[Guest guest]

Write your family letters of what you have wrote here on this site.

Let it all out - tell them you are grieving and its very hard but you

do have a plan. In light of all the expenses if anyone feels inclined

to offer gifts for Birthdays -as if they would mind giving the same

amount of money they would have spent on a gift. The hell with the

Peds DR's - find someone understanding on your team. The hell with

the people at the Park, you are making new friends here. And why do

you have to stop going to events, unless your children are senstive

to noise, foods etc..

If you list your state your from - I bet someone on the list can

start giving you some direction to go to a different Ped's DR.

In a year from now, you will have grown and changed so much - most of

what your worrying about today, will have gone away.... It sounds

like you have already seen some nice improvements.

Bless you and your family

In EOHarm , " anacat_11 " <anacat_11@...> wrote:

>

> Hi all. I've been having a bad two weeks because of the fact that

we

> have to tell my husband's family what we believe happened to the

> kids and to explain what we intend to do about it. Like I said in

an

> earlier post, I don't relish this and it's making things

more " real "

> to us. I'm not usually very weepy, but I've been afraid to go

> anywhere lately for fear of bursting into tears in public. The

axiom

> that the truth will set us free seems to have some small print

about

> what happens before the " free " part kicks in- like crushing

> doldrums, being disinvited to local garden parties, trouble with

> pediatricians and having to face how news of this makes family

> members go into shock.

> Our kids were born in late 2003 and, unfortunately, our son got a

> flu shot during the " shortage " of 2004, when he was about six

months

> old because of a previous bout of bronchiolitis which qualified him

> as " high risk " . Lucky him. It wasn't mandatory at the time and I

> wish I could set the clock back and rethink things. I don't have to

> tell anyone here about the propaganda stories on the news at the

> time about toddlers dying of the flu. His MMR at one year old

didn't

> help either.

> Both twins got flu shots at one and at two, at which point their

> language delay gave us pause about continuing any vaccinations. By

> then some buzz had leaked through the barbed wire: some people

> believed that something in vaccines was causing dev. delays in

> certain kids. When Early Intervention therapists starting this

> weird, unprompted campaign of trying to brainwash us

> that " thimerosal doesn't cause autism or language delay " and

> there's " no epidemic, just better recognition " , we started to put

> two and two together. Why were they telling us this when we didn't

> ask? This was actually the first we'd ever heard about thimerosal

> and it triggered more intense research on our part. They also tried

> to make us feed the kids commercial pudding, but that's another

> story.

> Of course the kids' pediatricians reported seeing nothing wrong

with

> the twins except for a language delay. In truth, the kids' symptoms

> were never obvious. When we started them on a six-month long trial

> of consuming cow's milk for the first time in their lives, our son

> slip-slid into ASD-like symptoms almost imperceptibly and our

> daughter's behavior became out of control, though her language

> skills increased and she continued showing a lot of precosity in

> numbers and reading. Her eye contact never flagged.

> A previous evaluation of our son by neurologists at two and 3/4-

> just before we'd given the kids milk for the first time- came up

> with a " specific language impairment " dx. By 3.2, in the midst of

> what we call the " dairy hell " period, our son was dx'ed

> with " probable ASD " by a speech pathologist and our daughter was

> dx'ed as having the " Einstein Syndrome " . The SP insisted, despite

> our protests, that the twins must have always been " very

different " ,

> since ASD is " genetic " and present at birth- so said he. This was

> our clue that he didn't know what he was talking about. If

anything,

> our son had always been more social than our daughter and had a

> pretty sophisticated sense of humor at only a few months old.

> I won't get into my theory of " chemically induced Einstein

Syndrome "

> for the moment, but we weren't buying any of it. We discovered some

> articles on GF/CF and started a carefully supplemented regimen. We

> did take the SP's one bit of decent advice and hired two

> affectionate, enthusiastic teenage girls to do some home-based

> speech enrichment with the twins and kept the twins away from any

> behavioral therapy involving prompting or aversives

> (even " ignoring " ). We agreed with the SP that our son was- at that

> point- too fragile and savvy to put up with prompting and had no

> behavior that needed modifying- he just needed help with speech. Of

> course the SP didn't believe there was any socially engaged,

> affectionate behavior to return to, though we couldn't let go of

the

> idea that our son would bounce back.

> Within five days after starting GF/CF, our son began talking again

> for the first time in over a year. His eye contact reappeared in

> full for the first time in four months and he ceased almost all

> repetitive behavior. He still whistles and yells at us if we talk

> too sternly. He likes his trains, but he's back to being an

> affectionate " barnacle boy " and looks everyone full in the eye,

> smiles, pulls pranks, laughs at sight or sound gags or simple word-

> play, kisses and says " I love you so much " . He also caught up with

> his sister in terms of early reading and enumerating within only a

> few months. He revisited the original set of neurologists who just

> gaped at us and asked what had changed in the intervening months.

We

> explained the milk regression and the ASD dx and they threw up

their

> hands. Our son seemed the same to them as before, just more chatty.

> And it's true, he was- he even went back to sitting in the lap of

> the same neuro as before.

> But neither twin is conversational even if their vocabs are

> increasing, and we were recently made aware that other things

> besides vaccines and dairy/gluten can make them temporarily regress

> or act out. We were at a playground where the wood structures had

> just been refinished with a petroleum/linseed combo and our son

> stopped smiling for a day or so and became very cranky. The

> whistling increased and he suddenly had more interst in the wheels

> of his cars again. It sent me into a major tailspin because we

> realized that we have to be fastidious about keeping them away from

> any toxic exposure whatsoever- including play centers, daycare

> centers, etc.. It scares me what might happen if they ever need

> anasthesia, but we'll cross that bridge when we come to it.

> They're not out of the woods by any means. We don't want to rush

the

> chelation until we understand everything possible, but I feel like

> there's a meter running somewhere. The twins' urinary porphyrin

> analyses came back positive for mercury. We'll repeat the tests

with

> Labcorp. It will be a long time until they lose their first baby

> teeth, at which point we'll have those tested for mercury as

> Aposhian suggested in Day 1 of the Omnibus transcript, though if

> they get the go-ahead, we'll begin chelating before then.

> We used to believe that language delay and precosity ran in my

> mother's side of the family. Now we're not so sure if this wasn't

> just generational heavy metal susceptability and a pretty

miraculous

> tendency towards spontaneous recovery. Everyone from that side grew

> up to be very social, successful, etc., so it would be difficult to

> guage. Either way, no one else in the family ever had this extreme

a

> language delay.

> Other things bugging us about this- we can't say a word about what

> we know to the peds for fear of getting blacklisted. And we should

> be able to! Insurance should pay for the whole treatment, it

> shouldn't be this hard. Never mind that it should never have

> happened to begin with. And everyone in our little suburb seems to

> be in chronic denial over the numbers of kids in special ed and

with

> language delays and processing disorders these days. They all just

> call it genetic, stick their kids on Ritalin and take comfort in

the

> fact that every fourth or fifth kid is in the same boat.

> Everyone in the usual summer cookout circuit used to swear to us

> that our kids couldn't be autistic, that they'd talk soon enough,

> etc.. Now they wish we'd just pick a dx, any dx, accept it as

> genetic and drink the koolade so the whole thing would stop making

> them uncomfortable and the thought of " vaccine injury " could be

> taken back out of the air. Even quietly questioning the issue of

> vaccines in general has made my social stock plummet. I'd find this

> funny but my " immunity " to these things has also plummeted for the

> moment. It doesn't help that we're a mixed culture household and

> artsy types. I wish we had our families and really close friends

> nearby, but they're spread accross three continents. Instead I'm

> stuck with the ladies at the playground who like to one-up each

> other on their " genetic ADHD " symptoms the way our grandmas might

> titter about the time they forgot their change purses at the

> supermarket.

> Aren't I a bit of good cheer? Sorry this was so long. Told you I

was

> having a bad few weeks- blah. Maybe it's not an uncommon sensation

> these days and there's been some communal consciousness-osmosed

> anxiety during the Omnibus. The only way out seems to be " through " .

> Glad to be here, though. I'm doing a lot of catch up and am very

> heartened by the kind of informed skepticism I'm seeing here.

>

[Guest guest]

That was a beautiful letter, thanks for sharing. As you are finding,

you are not alone. I can pretty much " ditto " your story with my son.

He's 4.6 and coming out of the dark day by day. Language isn't

quite up to his peers but we had 50 unintelligle words 1 year ago and

he was constantly sick.

I had great success with an " angel " from www.generationrescue.org. I

also recommend Montessori School and if you can, don't tell them

about the dx. If your kids are on the road to recovery, they will

thrive.

> >

> > Hi all. I've been having a bad two weeks because of the fact that

> we

> > have to tell my husband's family what we believe happened to the

> > kids and to explain what we intend to do about it. Like I said in

> an

> > earlier post, I don't relish this and it's making things

> more " real "

> > to us. I'm not usually very weepy, but I've been afraid to go

> > anywhere lately for fear of bursting into tears in public. The

> axiom

> > that the truth will set us free seems to have some small print

> about

> > what happens before the " free " part kicks in- like crushing

> > doldrums, being disinvited to local garden parties, trouble with

> > pediatricians and having to face how news of this makes family

> > members go into shock.

> > Our kids were born in late 2003 and, unfortunately, our son got a

> > flu shot during the " shortage " of 2004, when he was about six

> months

> > old because of a previous bout of bronchiolitis which qualified

him

> > as " high risk " . Lucky him. It wasn't mandatory at the time and I

> > wish I could set the clock back and rethink things. I don't have

to

> > tell anyone here about the propaganda stories on the news at the

> > time about toddlers dying of the flu. His MMR at one year old

> didn't

> > help either.

> > Both twins got flu shots at one and at two, at which point their

> > language delay gave us pause about continuing any vaccinations.

By

> > then some buzz had leaked through the barbed wire: some people

> > believed that something in vaccines was causing dev. delays in

> > certain kids. When Early Intervention therapists starting this

> > weird, unprompted campaign of trying to brainwash us

> > that " thimerosal doesn't cause autism or language delay " and

> > there's " no epidemic, just better recognition " , we started to put

> > two and two together. Why were they telling us this when we

didn't

> > ask? This was actually the first we'd ever heard about thimerosal

> > and it triggered more intense research on our part. They also

tried

> > to make us feed the kids commercial pudding, but that's another

> > story.

> > Of course the kids' pediatricians reported seeing nothing wrong

> with

> > the twins except for a language delay. In truth, the kids'

symptoms

> > were never obvious. When we started them on a six-month long

trial

> > of consuming cow's milk for the first time in their lives, our

son

> > slip-slid into ASD-like symptoms almost imperceptibly and our

> > daughter's behavior became out of control, though her language

> > skills increased and she continued showing a lot of precosity in

> > numbers and reading. Her eye contact never flagged.

> > A previous evaluation of our son by neurologists at two and 3/4-

> > just before we'd given the kids milk for the first time- came up

> > with a " specific language impairment " dx. By 3.2, in the midst of

> > what we call the " dairy hell " period, our son was dx'ed

> > with " probable ASD " by a speech pathologist and our daughter was

> > dx'ed as having the " Einstein Syndrome " . The SP insisted, despite

> > our protests, that the twins must have always been " very

> different " ,

> > since ASD is " genetic " and present at birth- so said he. This was

> > our clue that he didn't know what he was talking about. If

> anything,

> > our son had always been more social than our daughter and had a

> > pretty sophisticated sense of humor at only a few months old.

> > I won't get into my theory of " chemically induced Einstein

> Syndrome "

> > for the moment, but we weren't buying any of it. We discovered

some

> > articles on GF/CF and started a carefully supplemented regimen.

We

> > did take the SP's one bit of decent advice and hired two

> > affectionate, enthusiastic teenage girls to do some home-based

> > speech enrichment with the twins and kept the twins away from any

> > behavioral therapy involving prompting or aversives

> > (even " ignoring " ). We agreed with the SP that our son was- at

that

> > point- too fragile and savvy to put up with prompting and had no

> > behavior that needed modifying- he just needed help with speech.

Of

> > course the SP didn't believe there was any socially engaged,

> > affectionate behavior to return to, though we couldn't let go of

> the

> > idea that our son would bounce back.

> > Within five days after starting GF/CF, our son began talking

again

> > for the first time in over a year. His eye contact reappeared in

> > full for the first time in four months and he ceased almost all

> > repetitive behavior. He still whistles and yells at us if we talk

> > too sternly. He likes his trains, but he's back to being an

> > affectionate " barnacle boy " and looks everyone full in the eye,

> > smiles, pulls pranks, laughs at sight or sound gags or simple

word-

> > play, kisses and says " I love you so much " . He also caught up

with

> > his sister in terms of early reading and enumerating within only

a

> > few months. He revisited the original set of neurologists who

just

> > gaped at us and asked what had changed in the intervening months.

> We

> > explained the milk regression and the ASD dx and they threw up

> their

> > hands. Our son seemed the same to them as before, just more

chatty.

> > And it's true, he was- he even went back to sitting in the lap of

> > the same neuro as before.

> > But neither twin is conversational even if their vocabs are

> > increasing, and we were recently made aware that other things

> > besides vaccines and dairy/gluten can make them temporarily

regress

> > or act out. We were at a playground where the wood structures had

> > just been refinished with a petroleum/linseed combo and our son

> > stopped smiling for a day or so and became very cranky. The

> > whistling increased and he suddenly had more interst in the

wheels

> > of his cars again. It sent me into a major tailspin because we

> > realized that we have to be fastidious about keeping them away

from

> > any toxic exposure whatsoever- including play centers, daycare

> > centers, etc.. It scares me what might happen if they ever need

> > anasthesia, but we'll cross that bridge when we come to it.

> > They're not out of the woods by any means. We don't want to rush

> the

> > chelation until we understand everything possible, but I feel

like

> > there's a meter running somewhere. The twins' urinary porphyrin

> > analyses came back positive for mercury. We'll repeat the tests

> with

> > Labcorp. It will be a long time until they lose their first baby

> > teeth, at which point we'll have those tested for mercury as

> > Aposhian suggested in Day 1 of the Omnibus transcript, though if

> > they get the go-ahead, we'll begin chelating before then.

> > We used to believe that language delay and precosity ran in my

> > mother's side of the family. Now we're not so sure if this wasn't

> > just generational heavy metal susceptability and a pretty

> miraculous

> > tendency towards spontaneous recovery. Everyone from that side

grew

> > up to be very social, successful, etc., so it would be difficult

to

> > guage. Either way, no one else in the family ever had this

extreme

> a

> > language delay.

> > Other things bugging us about this- we can't say a word about

what

> > we know to the peds for fear of getting blacklisted. And we

should

> > be able to! Insurance should pay for the whole treatment, it

> > shouldn't be this hard. Never mind that it should never have

> > happened to begin with. And everyone in our little suburb seems

to

> > be in chronic denial over the numbers of kids in special ed and

> with

> > language delays and processing disorders these days. They all

just

> > call it genetic, stick their kids on Ritalin and take comfort in

> the

> > fact that every fourth or fifth kid is in the same boat.

> > Everyone in the usual summer cookout circuit used to swear to us

> > that our kids couldn't be autistic, that they'd talk soon enough,

> > etc.. Now they wish we'd just pick a dx, any dx, accept it as

> > genetic and drink the koolade so the whole thing would stop

making

> > them uncomfortable and the thought of " vaccine injury " could be

> > taken back out of the air. Even quietly questioning the issue of

> > vaccines in general has made my social stock plummet. I'd find

this

> > funny but my " immunity " to these things has also plummeted for

the

> > moment. It doesn't help that we're a mixed culture household and

> > artsy types. I wish we had our families and really close friends

> > nearby, but they're spread accross three continents. Instead I'm

> > stuck with the ladies at the playground who like to one-up each

> > other on their " genetic ADHD " symptoms the way our grandmas might

> > titter about the time they forgot their change purses at the

> > supermarket.

> > Aren't I a bit of good cheer? Sorry this was so long. Told you I

> was

> > having a bad few weeks- blah. Maybe it's not an uncommon

sensation

> > these days and there's been some communal consciousness-osmosed

> > anxiety during the Omnibus. The only way out seems to

be " through " .

> > Glad to be here, though. I'm doing a lot of catch up and am very

> > heartened by the kind of informed skepticism I'm seeing here.

> >

>

[Guest guest]

Thank you so much for your kind message. We realized that a lot of

our anxiety had to do with lack of social consensus in our area, so

kind words from those who " get it " are very effective!

I joked to my husband that I'm getting " weird " and " Dostoyevsky "

lately because of contemplating such dark subject matter. That's the

main reason I avoid certain events- I feel like " Debbie Downer " .

Even the science leads to head shaking and questions of how anyone

could have allowed this to happen. It's probably a mandatory phase

of going through this. I'm sure all of us and all our families are

forced to be " emotional athletes " in order to face this thing and

help our children. I will make an announcement that we live in MA

and need a new ped- thanks and all the best back. We appreciate the

support.

>

> Write your family letters of what you have wrote here on this

site.

> Let it all out - tell them you are grieving and its very hard but

you

> do have a plan. In light of all the expenses if anyone feels

inclined

> to offer gifts for Birthdays -as if they would mind giving the

same

> amount of money they would have spent on a gift. The hell with the

> Peds DR's - find someone understanding on your team. The hell with

> the people at the Park, you are making new friends here. And why

do

> you have to stop going to events, unless your children are

senstive

> to noise, foods etc..

> If you list your state your from - I bet someone on the list can

> start giving you some direction to go to a different Ped's DR.

> In a year from now, you will have grown and changed so much - most

of

> what your worrying about today, will have gone away.... It sounds

> like you have already seen some nice improvements.

> Bless you and your family

[Guest guest]

I am not as eloquent with words as some on this list but I would like

to say this has all been a very overwhelming experience. The more I

read the more I know and the more pissed off I get. It has been SO

unbelievable from the start. First off I frantically call the doctors

office to tell the nurse my son is not acting right following his

vaccines. He was not waking up from his nap after his ronud of

vaccines. His arm was swollen up at the injection site like a red

baseball with a quarter size pimple in the middle. I was told " this

is normal " just keep an eye on him. I was made to feel like I was

over reacting. Few hours later I was barely able to wake him. He just

stared limp and lifeless. I called back and was insistant that

something was NOT right and I need to bring him in. She

casually " works him in " . Only after weeks of research I find out this

is called an ENCEPHALOPHY. None of my other children had any issues

with their vaccines so this was all a surprise to me. (To make a long

story short.) NOW I see the medical records and there was NO mention

of any of this. A little note jotted down " localized reaction to

DTAP " . Before this incident he was developing right on schedule. The

PAT worker had been tracking his development since birth. She is

alarmed at his regression and refers him for intervention. Little did

I know my son would end up PDD-NOS with 3 unclear words at age 3. He

was behaving dangerously, throwing the groceries out of the cart,

running out of the house naked, getting out of his seatbelt AND

trying to open the van door, turning the furniture over, hitting his

sisters for no apparent reason, throwing large toys at the therapist

which ended up injuring her leg. Not to mention he runs off in a

screaming fit at the slightest loud noise. Mind you, I have 4 older

children who have had to go through this nightmare too. I became a

single parent a year after my sons birth. Its a miracle 3 of my kids

have managed to be consistant honor roll students. Then my sons

doctor shuns us every time we go in to see him. He was ALWAYS

uncomfortable after I blamed vaccines. We eventually got a new doctor

and I am so afraid that if I mention the word " vaccine " he may shun

us TOO and not give good medical care. I KNOW what did this to my

son. I saw it all unfold with my own eyes and YET I get treated like

I am irrational and ignorant for saying the almighty vaccines did

this to him???? These vaccine reactions are so rare I must be

mistaken. (eyeroll) PLEASE don't ask me to deny what my own eyes saw

happen. I hate to say it but HOW could this happen in the United

States Of America?????? THAT is what kills me the most. You would

think that officials would be RUNNING our aid. Instead we have to be

repeatedly insulted by the media and dragged through the mud to TRY

to get any kind of justice. Yes I am greatful for all the therapies

that have helped my son. Yes I am thankful for a GOOD 32 page IEP.

YES I am greatful that my son has been able to make progress BUT I am

also VERY pissed off that this happened. YES I have become ANTI-

Vaccine. When this all started I was for SAFER vaccines and more

accountability but now... MY TRUST IS COMPLETELY SHOT.....no pun

intended.

I am DONE. Thank you for allowing me to vent.

Tina

> >

> > Write your family letters of what you have wrote here on this

> site.

> > Let it all out - tell them you are grieving and its very hard but

> you

> > do have a plan. In light of all the expenses if anyone feels

> inclined

> > to offer gifts for Birthdays -as if they would mind giving the

> same

> > amount of money they would have spent on a gift. The hell with

the

> > Peds DR's - find someone understanding on your team. The hell

with

> > the people at the Park, you are making new friends here. And why

> do

> > you have to stop going to events, unless your children are

> senstive

> > to noise, foods etc..

> > If you list your state your from - I bet someone on the list can

> > start giving you some direction to go to a different Ped's DR.

> > In a year from now, you will have grown and changed so much -

most

> of

> > what your worrying about today, will have gone away.... It sounds

> > like you have already seen some nice improvements.

> > Bless you and your family

>

[Guest guest]

- thank you for the lovely response and thank you for the tip

about Montessori. At first we looked at Waldorf (agghh, the tuition)

but they de-stress reading which is a primary way in which our kids

choose on their own to learn. We wondered what Montessori would be

like for them. We're hoping that, by first grade, we can actually keep

defying the second dx our son received and go with the " removed ASD

dx " from the subsequent visit to the neuros. We're in this fight no

matter what, but it's a goal for us all to shed the labels through

treatment. Only time will tell but your words are very encouraging.

Peace.

>

> That was a beautiful letter, thanks for sharing. As you are

finding,

> you are not alone. I can pretty much " ditto " your story with my

son.

> He's 4.6 and coming out of the dark day by day. Language isn't

> quite up to his peers but we had 50 unintelligle words 1 year ago

and

> he was constantly sick.

>

> I had great success with an " angel " from www.generationrescue.org. I

> also recommend Montessori School and if you can, don't tell them

> about the dx. If your kids are on the road to recovery, they will

> thrive.

>

>

[Guest guest]

Hi there,

I too understand the feeling of "social siberia" and what makes it worse for me is the fact that the rest of my kids have now left home. We've been battling this beast for almost 27 years and it kills me to think that had we known, he might have cleared the mercury by age 5.

We all NEED each other.

Barb

Introducing myself and our vaccine-injured kids

Hi all. I've been having a bad two weeks because of the fact that we have to tell my husband's family what we believe happened to the kids and to explain what we intend to do about it. Like I said in an earlier post, I don't relish this and it's making things more "real" to us. I'm not usually very weepy, but I've been afraid to go anywhere lately for fear of bursting into tears in public. The axiom that the truth will set us free seems to have some small print about what happens before the "free" part kicks in- like crushing doldrums, being disinvited to local garden parties, trouble with pediatricians and having to face how news of this makes family members go into shock. Our kids were born in late 2003 and, unfortunately, our son got a flu shot during the "shortage" of 2004, when he was about six months old because of a previous bout of bronchiolitis which qualified him as "high risk". Lucky him. It wasn't mandatory at the time and I wish I could set the clock back and rethink things. I don't have to tell anyone here about the propaganda stories on the news at the time about toddlers dying of the flu. His MMR at one year old didn't help either. Both twins got flu shots at one and at two, at which point their language delay gave us pause about continuing any vaccinations. By then some buzz had leaked through the barbed wire: some people believed that something in vaccines was causing dev. delays in certain kids. When Early Intervention therapists starting this weird, unprompted campaign of trying to brainwash us that "thimerosal doesn't cause autism or language delay" and there's "no epidemic, just better recognition", we started to put two and two together. Why were they telling us this when we didn't ask? This was actually the first we'd ever heard about thimerosal and it triggered more intense research on our part. They also tried to make us feed the kids commercial pudding, but that's another story.Of course the kids' pediatricians reported seeing nothing wrong with the twins except for a language delay. In truth, the kids' symptoms were never obvious. When we started them on a six-month long trial of consuming cow's milk for the first time in their lives, our son slip-slid into ASD-like symptoms almost imperceptibly and our daughter's behavior became out of control, though her language skills increased and she continued showing a lot of precosity in numbers and reading. Her eye contact never flagged. A previous evaluation of our son by neurologists at two and 3/4- just before we'd given the kids milk for the first time- came up with a "specific language impairment" dx. By 3.2, in the midst of what we call the "dairy hell" period, our son was dx'ed with "probable ASD" by a speech pathologist and our daughter was dx'ed as having the "Einstein Syndrome". The SP insisted, despite our protests, that the twins must have always been "very different", since ASD is "genetic" and present at birth- so said he. This was our clue that he didn't know what he was talking about. If anything, our son had always been more social than our daughter and had a pretty sophisticated sense of humor at only a few months old. I won't get into my theory of "chemically induced Einstein Syndrome" for the moment, but we weren't buying any of it. We discovered some articles on GF/CF and started a carefully supplemented regimen. We did take the SP's one bit of decent advice and hired two affectionate, enthusiastic teenage girls to do some home-based speech enrichment with the twins and kept the twins away from any behavioral therapy involving prompting or aversives (even "ignoring"). We agreed with the SP that our son was- at that point- too fragile and savvy to put up with prompting and had no behavior that needed modifying- he just needed help with speech. Of course the SP didn't believe there was any socially engaged, affectionate behavior to return to, though we couldn't let go of the idea that our son would bounce back.Within five days after starting GF/CF, our son began talking again for the first time in over a year. His eye contact reappeared in full for the first time in four months and he ceased almost all repetitive behavior. He still whistles and yells at us if we talk too sternly. He likes his trains, but he's back to being an affectionate "barnacle boy" and looks everyone full in the eye, smiles, pulls pranks, laughs at sight or sound gags or simple word-play, kisses and says "I love you so much". He also caught up with his sister in terms of early reading and enumerating within only a few months. He revisited the original set of neurologists who just gaped at us and asked what had changed in the intervening months. We explained the milk regression and the ASD dx and they threw up their hands. Our son seemed the same to them as before, just more chatty. And it's true, he was- he even went back to sitting in the lap of the same neuro as before. But neither twin is conversational even if their vocabs are increasing, and we were recently made aware that other things besides vaccines and dairy/gluten can make them temporarily regress or act out. We were at a playground where the wood structures had just been refinished with a petroleum/linseed combo and our son stopped smiling for a day or so and became very cranky. The whistling increased and he suddenly had more interst in the wheels of his cars again. It sent me into a major tailspin because we realized that we have to be fastidious about keeping them away from any toxic exposure whatsoever- including play centers, daycare centers, etc.. It scares me what might happen if they ever need anasthesia, but we'll cross that bridge when we come to it.They're not out of the woods by any means. We don't want to rush the chelation until we understand everything possible, but I feel like there's a meter running somewhere. The twins' urinary porphyrin analyses came back positive for mercury. We'll repeat the tests with Labcorp. It will be a long time until they lose their first baby teeth, at which point we'll have those tested for mercury as Aposhian suggested in Day 1 of the Omnibus transcript, though if they get the go-ahead, we'll begin chelating before then. We used to believe that language delay and precosity ran in my mother's side of the family. Now we're not so sure if this wasn't just generational heavy metal susceptability and a pretty miraculous tendency towards spontaneous recovery. Everyone from that side grew up to be very social, successful, etc., so it would be difficult to guage. Either way, no one else in the family ever had this extreme a language delay. Other things bugging us about this- we can't say a word about what we know to the peds for fear of getting blacklisted. And we should be able to! Insurance should pay for the whole treatment, it shouldn't be this hard. Never mind that it should never have happened to begin with. And everyone in our little suburb seems to be in chronic denial over the numbers of kids in special ed and with language delays and processing disorders these days. They all just call it genetic, stick their kids on Ritalin and take comfort in the fact that every fourth or fifth kid is in the same boat. Everyone in the usual summer cookout circuit used to swear to us that our kids couldn't be autistic, that they'd talk soon enough, etc.. Now they wish we'd just pick a dx, any dx, accept it as genetic and drink the koolade so the whole thing would stop making them uncomfortable and the thought of "vaccine injury" could be taken back out of the air. Even quietly questioning the issue of vaccines in general has made my social stock plummet. I'd find this funny but my "immunity" to these things has also plummeted for the moment. It doesn't help that we're a mixed culture household and artsy types. I wish we had our families and really close friends nearby, but they're spread accross three continents. Instead I'm stuck with the ladies at the playground who like to one-up each other on their "genetic ADHD" symptoms the way our grandmas might titter about the time they forgot their change purses at the supermarket.Aren't I a bit of good cheer? Sorry this was so long. Told you I was having a bad few weeks- blah. Maybe it's not an uncommon sensation these days and there's been some communal consciousness-osmosed anxiety during the Omnibus. The only way out seems to be "through". Glad to be here, though. I'm doing a lot of catch up and am very heartened by the kind of informed skepticism I'm seeing here.

[Guest guest]

Just an idea. Check out the 'natural living' type groups in your area. I think you will find easier acceptance. The national group I belong to is called FNL = Familes for Natural Living - there are local subgroups all over. HTH

-----Original Message-----From: EOHarm [mailto:EOHarm ] On Behalf Of anacat_11Sent: Thursday, June 28, 2007 5:29 PMEOHarm Subject: Introducing myself and our vaccine-injured kids

Hi all. I've been having a bad two weeks because of the fact that we have to tell my husband's family what we believe happened to the kids and to explain what we intend to do about it. Like I said in an earlier post, I don't relish this and it's making things more "real" to us. I'm not usually very weepy, but I've been afraid to go anywhere lately for fear of bursting into tears in public. The axiom that the truth will set us free seems to have some small print about what happens before the "free" part kicks in- like crushing doldrums, being disinvited to local garden parties, trouble with pediatricians and having to face how news of this makes family members go into shock. Our kids were born in late 2003 and, unfortunately, our son got a flu shot during the "shortage" of 2004, when he was about six months old because of a previous bout of bronchiolitis which qualified him as "high risk". Lucky him. It wasn't mandatory at the time and I wish I could set the clock back and rethink things. I don't have to tell anyone here about the propaganda stories on the news at the time about toddlers dying of the flu. His MMR at one year old didn't help either. Both twins got flu shots at one and at two, at which point their language delay gave us pause about continuing any vaccinations. By then some buzz had leaked through the barbed wire: some people believed that something in vaccines was causing dev. delays in certain kids. When Early Intervention therapists starting this weird, unprompted campaign of trying to brainwash us that "thimerosal doesn't cause autism or language delay" and there's "no epidemic, just better recognition", we started to put two and two together. Why were they telling us this when we didn't ask? This was actually the first we'd ever heard about thimerosal and it triggered more intense research on our part. They also tried to make us feed the kids commercial pudding, but that's another story.Of course the kids' pediatricians reported seeing nothing wrong with the twins except for a language delay. In truth, the kids' symptoms were never obvious. When we started them on a six-month long trial of consuming cow's milk for the first time in their lives, our son slip-slid into ASD-like symptoms almost imperceptibly and our daughter's behavior became out of control, though her language skills increased and she continued showing a lot of precosity in numbers and reading. Her eye contact never flagged. A previous evaluation of our son by neurologists at two and 3/4- just before we'd given the kids milk for the first time- came up with a "specific language impairment" dx. By 3.2, in the midst of what we call the "dairy hell" period, our son was dx'ed with "probable ASD" by a speech pathologist and our daughter was dx'ed as having the "Einstein Syndrome". The SP insisted, despite our protests, that the twins must have always been "very different", since ASD is "genetic" and present at birth- so said he. This was our clue that he didn't know what he was talking about. If anything, our son had always been more social than our daughter and had a pretty sophisticated sense of humor at only a few months old. I won't get into my theory of "chemically induced Einstein Syndrome" for the moment, but we weren't buying any of it. We discovered some articles on GF/CF and started a carefully supplemented regimen. We did take the SP's one bit of decent advice and hired two affectionate, enthusiastic teenage girls to do some home-based speech enrichment with the twins and kept the twins away from any behavioral therapy involving prompting or aversives (even "ignoring"). We agreed with the SP that our son was- at that point- too fragile and savvy to put up with prompting and had no behavior that needed modifying- he just needed help with speech. Of course the SP didn't believe there was any socially engaged, affectionate behavior to return to, though we couldn't let go of the idea that our son would bounce back.Within five days after starting GF/CF, our son began talking again for the first time in over a year. His eye contact reappeared in full for the first time in four months and he ceased almost all repetitive behavior. He still whistles and yells at us if we talk too sternly. He likes his trains, but he's back to being an affectionate "barnacle boy" and looks everyone full in the eye, smiles, pulls pranks, laughs at sight or sound gags or simple word-play, kisses and says "I love you so much". He also caught up with his sister in terms of early reading and enumerating within only a few months. He revisited the original set of neurologists who just gaped at us and asked what had changed in the intervening months. We explained the milk regression and the ASD dx and they threw up their hands. Our son seemed the same to them as before, just more chatty. And it's true, he was- he even went back to sitting in the lap of the same neuro as before. But neither twin is conversational even if their vocabs are increasing, and we were recently made aware that other things besides vaccines and dairy/gluten can make them temporarily regress or act out. We were at a playground where the wood structures had just been refinished with a petroleum/linseed combo and our son stopped smiling for a day or so and became very cranky. The whistling increased and he suddenly had more interst in the wheels of his cars again. It sent me into a major tailspin because we realized that we have to be fastidious about keeping them away from any toxic exposure whatsoever- including play centers, daycare centers, etc.. It scares me what might happen if they ever need anasthesia, but we'll cross that bridge when we come to it.They're not out of the woods by any means. We don't want to rush the chelation until we understand everything possible, but I feel like there's a meter running somewhere. The twins' urinary porphyrin analyses came back positive for mercury. We'll repeat the tests with Labcorp. It will be a long time until they lose their first baby teeth, at which point we'll have those tested for mercury as Aposhian suggested in Day 1 of the Omnibus transcript, though if they get the go-ahead, we'll begin chelating before then. We used to believe that language delay and precosity ran in my mother's side of the family. Now we're not so sure if this wasn't just generational heavy metal susceptability and a pretty miraculous tendency towards spontaneous recovery. Everyone from that side grew up to be very social, successful, etc., so it would be difficult to guage. Either way, no one else in the family ever had this extreme a language delay. Other things bugging us about this- we can't say a word about what we know to the peds for fear of getting blacklisted. And we should be able to! Insurance should pay for the whole treatment, it shouldn't be this hard. Never mind that it should never have happened to begin with. And everyone in our little suburb seems to be in chronic denial over the numbers of kids in special ed and with language delays and processing disorders these days. They all just call it genetic, stick their kids on Ritalin and take comfort in the fact that every fourth or fifth kid is in the same boat. Everyone in the usual summer cookout circuit used to swear to us that our kids couldn't be autistic, that they'd talk soon enough, etc.. Now they wish we'd just pick a dx, any dx, accept it as genetic and drink the koolade so the whole thing would stop making them uncomfortable and the thought of "vaccine injury" could be taken back out of the air. Even quietly questioning the issue of vaccines in general has made my social stock plummet. I'd find this funny but my "immunity" to these things has also plummeted for the moment. It doesn't help that we're a mixed culture household and artsy types. I wish we had our families and really close friends nearby, but they're spread accross three continents. Instead I'm stuck with the ladies at the playground who like to one-up each other on their "genetic ADHD" symptoms the way our grandmas might titter about the time they forgot their change purses at the supermarket.Aren't I a bit of good cheer? Sorry this was so long. Told you I was having a bad few weeks- blah. Maybe it's not an uncommon sensation these days and there's been some communal consciousness-osmosed anxiety during the Omnibus. The only way out seems to be "through". Glad to be here, though. I'm doing a lot of catch up and am very heartened by the kind of informed skepticism I'm seeing here.