Re: Meet Girl Who Won 1st Vaccine Case

[Guest guest]

--- autisticcrystal@... wrote:

>

> In a message dated 3/10/2008 6:34:12 P.M. Central

> Daylight Time,

> kassihatestwistin@... writes:

>

> It's dangerous to kids to just jump on the next

> theory, and honestly people really need to know

> what

> theyre " hoping for " with this. No, they DON'T want

> their kids to have mito. Mito doesn't go away,

> generally doesn't improve, etc.

>

> Kassiane

>

>

>

>

> if a kid has mito, a kid has mito and it's not going

> to go away if it goes

> undiagnosed for years. a kid isn't going to end up

> with mito simply because

> parents want it to be mito. mito isn't a theory it's

> a very undiagnosed

> condition responsible for hundreds of diseases, and

> people can live years living

> with mito and not know it. although treatment can

> help many. we got lucky with

> DAN docs but only because they supplemented a lot

> but they didn't really know

> what they were looking at although they had a sense

> of what was happening. so

> we were seeing a lot of results with DAN before we

> were finally with a mito

> specialist.

I know it isn't going to go away not being diagnosed.

That isn't my POINT.

My point, which apparently I'm having trouble making,

is that treating without testing or with crappy tests,

can be dangerous. Like, say the kid has a a urea cycle

disorder and they protein/fat load (Im on a high

protein diet to skip whichever complex it is that they

decided is kinda crappy), because mito is the thing du

jour in autism. That isn't going to go so well. Or the

kid has a legitimate Issue with constipation and they

do that, it is NOT going to get better. Or the kid has

a corn allergy and they do the oh so tasty corn starch

pudding that I refuse to eat except when Im sick

because I'm old enough to be slightly self defeating.

Or oh my word, load a kid with another genetic issue

with creatine (they had me on snotloads for a while,

to keep my weight up, otherwise Im under 100 pounds)

and OOPS the other genetic issue that was missed, that

might actually CAUSE a decrease in mitochondrial

functioning, hurts the kidneys.

Or if they jump into it half cocked and decide that

DCA is a brilliant idea because it was tested in

MELAS. Ooooh that'd be BAAAAD news. Because they threw

out DCA for very good reasons. I sure wont touch the

stuff, no ma'am.

*sigh* I wish that something else would have made them

look at this, because the important stuff is going to

get lost.

Kassiane

quite medical and still needlephobic as all get out,

incidentally

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[Guest guest]

THAT ISN'T WHAT I AM STATING.

I AM SAYING

THAT

THEY

TOOK

HANNAH

OUT

OF

THE

BIGASS

LAWSUIT

BECAUSE

SHE

WASNT

REPRESENTATIVE

OF

THE

WHOLE

THUS

NOT

QUALIFIED

TO

BE

A

TEST

CASE.

If I were saying anything else I WOULD SAY IT, in

plain unadorned English. Or slightly adorned but not

much.

Note that also I think that this belongs as a case of

mitochondrial awareness not autism awareness because

people know about autism, they DONT know the ways that

mito presents. Mito is a LOT SCARIER than autism.

Kassiane

--- autisticcrystal@... wrote:

>

> In a message dated 3/10/2008 6:23:08 P.M. Central

> Daylight Time,

> kassihatestwistin@... writes:

>

> The omnibus is the whole hunka lotta cases suing

> the

> government for autism. She isn't part of that

> because

> they don't have ONE OTHER MITO KID in the whole

> pack.

> Not ONE.

>

>

>

>

>

> again this is an inaccuracy. they do have more asd's

> with mito issues in the

> whole pack as you are stating. i personally know

> some of them. there are

> also individuals with mito issues without autism in

> the whole pack as well as

> autistic cases with mito issues in the whole pack.

> how can you say there aren't

> any mito cases in the whole pack when we ARE another

> case as well as other

> people we personally know as well as just know

> about? i don't get you. my

> nephew is dead. he is mito he reacted from the

> vaccine are you stating his case

> doesn't exist? he's an autistic case with ignored

> mito, who reacted and

> regressed and later died from his injuries. so you

> can't say that at all.

>

>

>

>

>

> **************It's Tax Time! Get tips, forms, and

> advice on AOL Money &

> Finance.

> (http://money.aol.com/tax?NCID=aolprf00030000000001)

>

>

> [Non-text portions of this message have been

> removed]

>

>

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[Guest guest]

>

> >

> > In a message dated 3/10/2008 6:23:08 P.M. Central

> > Daylight Time,

> > kassihatestwistin@... writes:

> >

> > The omnibus is the whole hunka lotta cases suing

> > the

> > government for autism. She isn't part of that

> > because

> > they don't have ONE OTHER MITO KID in the whole

> > pack.

> > Not ONE.

> >

> >

> >

> >

> >

> > again this is an inaccuracy. they do have more asd's

> > with mito issues in the

> > whole pack as you are stating. i personally know

> > some of them. there are

> > also individuals with mito issues without autism in

> > the whole pack as well as

> > autistic cases with mito issues in the whole pack.

> > how can you say there aren't

> > any mito cases in the whole pack when we ARE another

> > case as well as other

> > people we personally know as well as just know

> > about? i don't get you. my

> > nephew is dead. he is mito he reacted from the

> > vaccine are you stating his case

> > doesn't exist? he's an autistic case with ignored

> > mito, who reacted and

> > regressed and later died from his injuries. so you

> > can't say that at all.

> >

> >

> >

> >

> >

> > **************It's Tax Time! Get tips, forms, and

> > advice on AOL Money &

> > Finance.

> > (http://money.aol.com/tax?NCID=aolprf00030000000001)

> >

> >

> > [Non-text portions of this message have been

> > removed]

> >

> >

>

>

>

>

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