Re: Discussion of prognosis

[Guest guest]

Kathy,

Yes, I agree on any gains!

I would shed a bucket of tears if my 24 year old will just feel less of a

need to self abuse!

Tricia

[Guest guest]

<< > There are many active things you can do to increase brain healing.

E.g. the therapeutic agents you mention in your book under Brain

Support? Please say more. >>

Vision therapy.

Brain gym and related " flaky " stuff to exercise the brain.

More normal stuff to exercise the brain like performing difficult

intellectual tasks of the type you are deficient in.

Learning new things - particularly of the type you have trouble with.

If you do these you have to push it - exercising your brain is just like

exercising a muscle. It only gets big and strong if you push hard.

There is much art in how to do this - apparently completely unknown to MD's.

Talk to other types of health care practitioners.

Is this good enough?

Andy

[Guest guest]

Personally, I'll take any gains, my 2 cents

Kathy

[ ] Discussion of prognosis

>Dr. Amy suggested:

>

>cure if chelated before adrenarche

>

>great improvement if chelated before puberty

>

>limited improvement if chelated afterwards.

>

>Personally I don't think it is that cut and dried. I am not that

>pessimistic. This may however have flowed from some discussions she and I

>did have about what stages of development present the greatest healing

>opportunities for the toxin injured brain.

>

>I also am not aware of any real clinical data on this.

>

>What I would say at this point is:

>

>Adrenarche (about age 8) is likely to cause significant healing if detoxed

>prior to it.

>

>Same for puberty.

>

>Detox itself will lead to some healing if nothing else is done.

>

>The brain does heal much more than the AMA religious dogma indicates.

>

>There are many active things you can do to increase brain healing.

>

>So I would say the earlier the better, and the earlier detox happens the

>less likely other active therapies (medical, " nutritional " or other) will

be

>needed. But I don't think I can make any cut and dried statements about

how

>well people will heal. Especially given the great interindividual

variation

>in their situation. Remember, the kids who got zapped are already the ones

>who had something unusual about them.

>

>In 5 or 10 years we may have a definitive answer to this question. It is

>unlikely you will hear it from any AMA worshippers for about another

century

>though. Since opportunities pass, as does life, if you wait I suggest

you

>get on with detox, be hopeful, and don't worry about exactly what the

>ultimate outcome will be. You will find that out soon enough if you try to

>get your kid better.

>

>Andy Cutler

>

>Andy Cutler

>

>

>

>

[Guest guest]

>

> There are many active things you can do to increase brain healing.

E.g. the therapeutic agents you mention in your book under Brain

Support? Please say more.

Gerard

[Guest guest]

In a message dated 07/27/2000 7:02:40 PM Eastern Daylight Time,

kblanco@... writes:

<< I recommend all to read this site

www.handle.org . Made my oldest verbal in one month!

Kathy >>

How? Tell me more please. Thankyou. Carole

[Guest guest]

What does HBOT therapy do to mercury andy?

Kathy

Re: [ ] Re: Discussion of prognosis

><< > There are many active things you can do to increase brain healing.

>

>E.g. the therapeutic agents you mention in your book under Brain

>Support? Please say more. >>

>

>Vision therapy.

>

>Brain gym and related " flaky " stuff to exercise the brain.

>

>More normal stuff to exercise the brain like performing difficult

>intellectual tasks of the type you are deficient in.

>

>Learning new things - particularly of the type you have trouble with.

>

>If you do these you have to push it - exercising your brain is just like

>exercising a muscle. It only gets big and strong if you push hard.

>

>There is much art in how to do this - apparently completely unknown to

MD's.

>Talk to other types of health care practitioners.

>

>Is this good enough?

>

>Andy

>

>

>

>

[Guest guest]

I recommend all to read this site

www.handle.org . Made my oldest verbal in one month!

Kathy

Re: [ ] Re: Discussion of prognosis

><< > There are many active things you can do to increase brain healing.

>

>E.g. the therapeutic agents you mention in your book under Brain

>Support? Please say more. >>

>

>Vision therapy.

>

>Brain gym and related " flaky " stuff to exercise the brain.

>

>More normal stuff to exercise the brain like performing difficult

>intellectual tasks of the type you are deficient in.

>

>Learning new things - particularly of the type you have trouble with.

>

>If you do these you have to push it - exercising your brain is just like

>exercising a muscle. It only gets big and strong if you push hard.

>

>There is much art in how to do this - apparently completely unknown to

MD's.

>Talk to other types of health care practitioners.

>

>Is this good enough?

>

>Andy

>

>

>

>

[Guest guest]

Prognosis depends so much on the individual person and the stimulation you

provide as you are healing and after the healing is complete. I would think

it would be extremely rare for you to be able to chelate a 4+ year old, not

do anything else, and have them magically re-work their brain to account for

those developmental years they lost when spaced out on mercury or whatever

metals. However, research has shown that the brain is amazingly able to

rework itself with the right stimulation well into adulthood. The older the

child when you start, the harder it may be, but not impossible. Identifying

the child's challenges and working on them intensively while you're chelating

could provide the greatest opportunity for them to reach their fullest

potential. There are so many ways to provide good stimulation for our kids

these days. Investigate all the therapy options and determine which fit best

for your child.

A few of the programs/therapies I know of which could help re-build brain

power, rebuild or rework sensory input/output and/or help a child catch up

include:

Applied Behavioral Analysis & Lovaas

Son-Rise

National Academy of Child Development

Sensory Integration Therapy

Brain Gym

Biofeedback Training

Neurofeedback Stimulation with Flexyx System

Auditory Integration Therapy or other sound therapies like

Tomatis, The Listening Program or Samonas

Vision Therapy

I'm sure there are more out there along with folks giving really good

stimulation just winging it on their own. We've done many of these in some

way over the years so I'd be happy to answer any questions about them or

refer you on to more resources. We haven't done AIT, but have done TLP and

Samonas. Also we haven't done Biofeedback but will start the Neurofeedback

next month. Our use of ABA is very limited but I'm sure there are others on

this list that could help with that.

One final ray of hope: if an 18-year-old non-verbal autistic teen can start

talking in phrases after only a year in a Son-Rise intensive therapy program,

anything is possible with our kids at any age.

Gaylen

[Guest guest]

In a message dated 07/28/2000 1:23:21 PM Eastern Daylight Time,

kblanco@... writes:

<< IF you would like to contact the

founder, who by the way was also diagnosed as autistic when younger please

contact judith@... she will answer your questions, or call the

institute. The best decision I ever made!

Kathy >>

Thankyou for your response. Glad you found it so helpful. Carole

[Guest guest]

They do neuromapping excercises, working on system weaknesses. My child's

weaknesses were so universal he was paying attention to getting enough

oxygen in his system, basic things. (we found out later that he had sleep

apnea ...hmmmsounds like mercury poisining to me...anyways, we also knew

that he was having problems with even eating becuase his TONSILS were so

large that he could hardly take a few seconds to swallow and breath and

relax while eating-let alone talk). We worked on muscle/nerve highways that

go to the speech center in the brain. IF you would like to contact the

founder, who by the way was also diagnosed as autistic when younger please

contact judith@... she will answer your questions, or call the

institute. The best decision I ever made!

Kathy

From: Lulu1958@... <Lulu1958@...>

egroups < egroups>

Date: Thursday, July 27, 2000 6:50 PM

Subject: Re: [ ] Re: Discussion of prognosis

>In a message dated 07/27/2000 7:02:40 PM Eastern Daylight Time,

>kblanco@... writes:

>

><< I recommend all to read this site

> www.handle.org . Made my oldest verbal in one month!

> Kathy >>

>

>How? Tell me more please. Thankyou. Carole

>

>

>

>

[Guest guest]

<< But, he has excellent data as far as what to expect based on the

age of the child upon complete toxin removal. >>

His data for adults are not consistent with reports of his patients, many of

whom I have spoken with.

Nothing Edelson does in the way of chelation would be expected to remove any

mercury whatsoever from the central nervous system, and a lot of it would be

expected to increase the amount of brain mercury. So I'd consider his stated

results to be a lower bound for your expectations if you believe them at all.

Personally I think Edelson does honestly report what he thinks is happening

with his patients and bases these reports on appropriate observation and

testing. I just think he doesn't track down the large number of patients who

drop out of his program when it isn't working magic for them (it is quite

expensive so this is pretty reasonable to expect) and I think he relies more

on his memory - which will be biased towards successes since those are more

memorable - than on careful generation of statistics.

There is also the substantial problem - well understood in the medical

literature of the '60's but apparently one of the things that was " sanitized "

in the '70's - of patient self selection. Especially with a controversial

and expensive program like Edelson's, there is every reason to expect that

the group of patients who presents to him for treatment is NOT representative

of the larger pool of people with the same " diagnosis. "

I think Edelson's work is most usefully understood if we appreciate it as the

creative expression of a talented man practicing the art of medicine rather

than as anything particularly scientific.

Andy Cutler

[Guest guest]

Andy,

Actually, the data came from Steve Edelson. Bear in mind that I

am not an Edelson-worshipper - I think he charges far too much for

what he does, and I do not like his chelation protocols AT ALL.

But, he has excellent data as far as what to expect based on the

age of the child upon complete toxin removal.

So far, our results have been a little better than expected, but it

is too early to make any conclusions yet.

Amy

------------------ Reply Separator --------------------

Originally From: AndyCutler@...

Subject: [ ] Discussion of prognosis

Date: 07/27/2000 02:54pm

Dr. Amy suggested:

cure if chelated before adrenarche

great improvement if chelated before puberty

limited improvement if chelated afterwards.

Personally I don't think it is that cut and dried. I am not that

pessimistic. This may however have flowed from some discussions she

and I

did have about what stages of development present the greatest healing

opportunities for the toxin injured brain.

I also am not aware of any real clinical data on this.

What I would say at this point is:

Adrenarche (about age 8) is likely to cause significant healing if

detoxed

prior to it.

Same for puberty.

Detox itself will lead to some healing if nothing else is done.

The brain does heal much more than the AMA religious dogma indicates.

There are many active things you can do to increase brain healing.

So I would say the earlier the better, and the earlier detox happens

the

less likely other active therapies (medical, " nutritional " or other)

will be

needed. But I don't think I can make any cut and dried statements

about how

well people will heal. Especially given the great interindividual

variation

in their situation. Remember, the kids who got zapped are already the

ones

who had something unusual about them.

In 5 or 10 years we may have a definitive answer to this question. It

is

unlikely you will hear it from any AMA worshippers for about another

century

though. Since opportunities pass, as does life, if you wait I

suggest you

get on with detox, be hopeful, and don't worry about exactly what the

ultimate outcome will be. You will find that out soon enough if you

try to

get your kid better.

Andy Cutler

Andy Cutler

--------------------------------------------------------------------<e

|-

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[Guest guest]

<< Andy, I think one of the worst things a physician can do is to

purposely give parents false hopes. So I try to understate the

prognosis, and if the child does better than I think he will - GREAT!

There is nothing better than a nice surprise. >>

Yeah. The line between not taking away hope (e. g. as I understand you were

taught not to do with cancer patients) and of not holding out false hope is a

difficult one.

Clearly the present " AMA worshipper " line is excessively conservative - there

is no hope. Claiming all the kids will get well is unlikely to be any more

accurate.

In the absence of knowledge I prefer to share my uncertainty rather than give

a definitive seeming guideline and risk parents stopping too soon. Of

course, by so doing there is risk parents will become frustrated trying to

push beyond what is possible, but I'd rather they risk frustration than risk

bad decisions based on false certainties - especially since this is the

primary problem in autism care today. The false certainty pronounced from on

high by neurologists that nothing can be done causes most parents to do

exactly that.

Andy Cutler

[Guest guest]

<< I would love to be able to accurately predict a child's prognosis,

but we have no data other than Edelson's to base anything on right

now. Anything else we say would be guessing. >>

So why not guess and label it as such? By providing a " cautious " but

definitive appearing prognosis you have in essence already made a guess.

Andy

[Guest guest]

<< His data is still excellent. >>

His data is appallingly mediocre by any legitimate scientific standard.

He does admit this implicitly by stating that most children don't make it

through his program and then not providing follow up data on them. I'm not

criticizing his honesty, and he may well have the best data that is

available. It just isn't very good.

Since medicine is an art, not a science, Edelson's data is valuable in that

it tells you the one thing you do need to know - there is hope. However, it

tells you very little else.

Andy Cutler

PS. An excellent example is the claim that DMPS injections don't cause

adverse reactions even though all reasonable estimates show those occur with

about 1 patient in 6. This claim is based on those patients who continue

treatment and doesn't account for those who drop out - which as you would

imagine includes almost all of the people who have an adverse reaction to it.

[Guest guest]

Dr. Amy and Dr. Jane and everybody:

I am NOT trying to just be a twit or to jerk you around in the way I talk

about Edelson's data. I am trying to keep us all focussed on the first and

most important part of knowledge - understanding exactly what it is we do,

and don't, know.

Andy Cutler

[Guest guest]

<< he has provided us with decent data that shows if one gets the

toxins out of an autistic child, there is a chance of

normalization. And because of that fact alone, his data is

very valuable to us. >>

Yes. Dr. Edelson proved that some autistic children can be cured by

detoxification. Now other people can figure out the statistics of how many

can be cured, and how much improvement can be expected.

Andy Cutler

[Guest guest]

Amy,

I know your busy, but can you give a really brief summary of Edelson's

data. Has he completely detoxed very many kids who have had complete

recovery?

Thanks,

anxious

On Fri, 28 Jul 2000 16:51:53 -0400 (EDT) Amy Holmes <aholmesmd@...>

writes:

> Andy,

>

> Actually, the data came from Steve Edelson. Bear in mind that I

> am not an Edelson-worshipper - I think he charges far too much for

> what he does, and I do not like his chelation protocols AT ALL.

> But, he has excellent data as far as what to expect based on the

> age of the child upon complete toxin removal.

>

> So far, our results have been a little better than expected, but it

> is too early to make any conclusions yet.

>

> Amy

>

>

>

> ------------------ Reply Separator --------------------

> Originally From: AndyCutler@...

> Subject: [ ] Discussion of prognosis

> Date: 07/27/2000 02:54pm

>

>

> Dr. Amy suggested:

>

> cure if chelated before adrenarche

>

> great improvement if chelated before puberty

>

> limited improvement if chelated afterwards.

>

> Personally I don't think it is that cut and dried. I am not that

> pessimistic. This may however have flowed from some discussions she

>

> and I

> did have about what stages of development present the greatest

> healing

> opportunities for the toxin injured brain.

>

> I also am not aware of any real clinical data on this.

>

> What I would say at this point is:

>

> Adrenarche (about age 8) is likely to cause significant healing if

> detoxed

> prior to it.

>

> Same for puberty.

>

> Detox itself will lead to some healing if nothing else is done.

>

> The brain does heal much more than the AMA religious dogma

> indicates.

>

> There are many active things you can do to increase brain healing.

>

> So I would say the earlier the better, and the earlier detox

> happens

> the

> less likely other active therapies (medical, " nutritional " or other)

>

> will be

> needed. But I don't think I can make any cut and dried statements

> about how

> well people will heal. Especially given the great interindividual

> variation

> in their situation. Remember, the kids who got zapped are already

> the

> ones

> who had something unusual about them.

>

> In 5 or 10 years we may have a definitive answer to this question.

> It

> is

> unlikely you will hear it from any AMA worshippers for about another

>

> century

> though. Since opportunities pass, as does life, if you wait I

> suggest you

> get on with detox, be hopeful, and don't worry about exactly what

> the

> ultimate outcome will be. You will find that out soon enough if you

>

> try to

> get your kid better.

>

> Andy Cutler

>

> Andy Cutler

>

> --------------------------------------------------------------------<e

> |-

> Need a credit card?

> Instant Approval and 0% intro APR with Aria!

> 1/7101/9/_/705339/_/964724063/

> --------------------------------------------------------------------|e

> >-

>

>

[Guest guest]

I do not know the numbers, sorry. He presented a number of case

reports during the conference complete with before, during and

after treatment videos. That afternoon, Cave and I

sort of " cornered " him, and he wound up talking to us for over 3

hours. That is how we learned exactly what he was doing, and a

general feel for his statistics. Unfortunately, I did not take

notes and had to rely on my memory for everything, which explains why

I forgot the exact numbers. The bottom line was the part I

remembered well, though, and that was the general guidelines for

prognosis based on age at complete toxin removal. The case reports

with the videos were quite striking. He presented several young kids

(less than 7 1/2 by the time toxins were gone) who had completely

normalized. That was the part that was really impressive.

Amy

------------------ Reply Separator --------------------

Originally From: D Bogert <howard78@...>

Subject: Re: [ ] Discussion of prognosis

Date: 07/28/2000 05:22pm

Amy,

I know your busy, but can you give a really brief summary of Edelson's

data. Has he completely detoxed very many kids who have had complete

recovery?

Thanks,

anxious

On Fri, 28 Jul 2000 16:51:53 -0400 (EDT) Amy Holmes

<aholmesmd@...>

writes:

> Andy,

>

> Actually, the data came from Steve Edelson. Bear in mind that I

> am not an Edelson-worshipper - I think he charges far too much for

> what he does, and I do not like his chelation protocols AT ALL.

> But, he has excellent data as far as what to expect based on the

> age of the child upon complete toxin removal.

>

> So far, our results have been a little better than expected, but it

> is too early to make any conclusions yet.

>

> Amy

>

>

>

> ------------------ Reply Separator --------------------

> Originally From: AndyCutler@...

> Subject: [ ] Discussion of prognosis

> Date: 07/27/2000 02:54pm

>

>

> Dr. Amy suggested:

>

> cure if chelated before adrenarche

>

> great improvement if chelated before puberty

>

> limited improvement if chelated afterwards.

>

> Personally I don't think it is that cut and dried. I am not that

> pessimistic. This may however have flowed from some discussions she

>

> and I

> did have about what stages of development present the greatest

> healing

> opportunities for the toxin injured brain.

>

> I also am not aware of any real clinical data on this.

>

> What I would say at this point is:

>

> Adrenarche (about age 8) is likely to cause significant healing if

> detoxed

> prior to it.

>

> Same for puberty.

>

> Detox itself will lead to some healing if nothing else is done.

>

> The brain does heal much more than the AMA religious dogma

> indicates.

>

> There are many active things you can do to increase brain healing.

>

> So I would say the earlier the better, and the earlier detox

> happens

> the

> less likely other active therapies (medical, " nutritional " or other)

>

> will be

> needed. But I don't think I can make any cut and dried statements

> about how

> well people will heal. Especially given the great interindividual

> variation

> in their situation. Remember, the kids who got zapped are already

> the

> ones

> who had something unusual about them.

>

> In 5 or 10 years we may have a definitive answer to this question.

> It

> is

> unlikely you will hear it from any AMA worshippers for about another

>

> century

> though. Since opportunities pass, as does life, if you wait I

> suggest you

> get on with detox, be hopeful, and don't worry about exactly what

> the

> ultimate outcome will be. You will find that out soon enough if you

>

> try to

> get your kid better.

>

> Andy Cutler

>

> Andy Cutler

>

>

--------------------------------------------------------------------<e

> |-

> Need a credit card?

> Instant Approval and 0% intro APR with Aria!

> 1/7101/9/_/705339/_/964724063/

>

--------------------------------------------------------------------|e

> >-

>

>

[Guest guest]

His data is still excellent. I think what saves his " butt " with

the ridculous chelation protocols he uses is his use of the

sauna. The children who did actually complete the whole program

(not a large percentage by his own admission) did fall into the

3 broad categories based on age. And, his video documentation was

excellent - the case reports he presented.

That having been said, we are getting a little better response than

we expected so far, but it is very early. I guess a reasonable

worst case prognosis might be the ones outlined by Edelson, but

perhaps the real prgnosis is better - we shall see.

Andy, I think one of the worst things a physician can do is to

purposely give parents false hopes. So I try to understate the

prognosis, and if the child does better than I think he will - GREAT!

There is nothing better than a nice surprise.

I would love to be able to accurately predict a child's prognosis,

but we have no data other than Edelson's to base anything on right

now. Anything else we say would be guessing.

Amy

------------------ Reply Separator --------------------

Originally From: AndyCutler@...

Subject: Re: [ ] Discussion of prognosis

Date: 07/28/2000 06:29pm

<< But, he has excellent data as far as what to expect based on the

age of the child upon complete toxin removal. >>

His data for adults are not consistent with reports of his patients,

many of

whom I have spoken with.

Nothing Edelson does in the way of chelation would be expected to

remove any

mercury whatsoever from the central nervous system, and a lot of it

would be

expected to increase the amount of brain mercury. So I'd consider his

stated

results to be a lower bound for your expectations if you believe them

at all.

Personally I think Edelson does honestly report what he thinks is

happening

with his patients and bases these reports on appropriate observation

and

testing. I just think he doesn't track down the large number of

patients who

drop out of his program when it isn't working magic for them (it is

quite

expensive so this is pretty reasonable to expect) and I think he

relies more

on his memory - which will be biased towards successes since those are

more

memorable - than on careful generation of statistics.

There is also the substantial problem - well understood in the medical

literature of the '60's but apparently one of the things that was

" sanitized "

in the '70's - of patient self selection. Especially with a

controversial

and expensive program like Edelson's, there is every reason to expect

that

the group of patients who presents to him for treatment is NOT

representative

of the larger pool of people with the same " diagnosis. "

I think Edelson's work is most usefully understood if we appreciate it

as the

creative expression of a talented man practicing the art of medicine

rather

than as anything particularly scientific.

Andy Cutler

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[Guest guest]

You are correct.

Amy

------------------ Reply Separator --------------------

Originally From: AndyCutler@...

Subject: Re: [ ] Discussion of prognosis

Date: 07/28/2000 10:09pm

<< Andy, I think one of the worst things a physician can do is to

purposely give parents false hopes. So I try to understate the

prognosis, and if the child does better than I think he will - GREAT!

There is nothing better than a nice surprise. >>

Yeah. The line between not taking away hope (e. g. as I understand

you were

taught not to do with cancer patients) and of not holding out false

hope is a

difficult one.

Clearly the present " AMA worshipper " line is excessively conservative

- there

is no hope. Claiming all the kids will get well is unlikely to be any

more

accurate.

In the absence of knowledge I prefer to share my uncertainty rather

than give

a definitive seeming guideline and risk parents stopping too soon. Of

course, by so doing there is risk parents will become frustrated

trying to

push beyond what is possible, but I'd rather they risk frustration

than risk

bad decisions based on false certainties - especially since this is

the

primary problem in autism care today. The false certainty pronounced

from on

high by neurologists that nothing can be done causes most parents to

do

exactly that.

Andy Cutler

--------------------------------------------------------------------<e

|-

Was the salesman clueless? Productopia has the answers.

1/4633/9/_/705339/_/964836553/

--------------------------------------------------------------------|e

>-

[Guest guest]

And that is exactly what I try to do - give them the available

data, and them state that it is too early with the other available

data to tell.

Amy

------------------ Reply Separator --------------------

Originally From: AndyCutler@...

Subject: Re: [ ] Discussion of prognosis

Date: 07/28/2000 10:10pm

<< I would love to be able to accurately predict a child's prognosis,

but we have no data other than Edelson's to base anything on right

now. Anything else we say would be guessing. >>

So why not guess and label it as such? By providing a " cautious " but

definitive appearing prognosis you have in essence already made a

guess.

Andy

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[Guest guest]

Hi Everyone,

Nobody asked for my opinion, but I'll throw it in anyway. :-)

Personally, I am THRILLED with the prognosis that my child who is " pre-verbal "

and hypersensitive to the world, might some day talk and perhaps live

independently.

Kenny is 7. I haven't given up hope. I'm a fighter. I've been doing ABA with

him since he was a little over 2. I think the odds are in his favor. I hope

that two years or so from now, I'll be able to write and say my son has " lost "

his label.

When I posted about our appointment with Dr. Amy, I DELIBERATELY put in the part

about the ages, because if I can motivate even ONE MORE PARENT to do this for

their child NOW, instead of waiting, then it was a good thing to do.

I heard about the " mercury connection " a year ago. I try to stay on top of

things, and we have done many different treatments with Kenny. He was Dr.

Horvath's fourth secretin patient, and we learned the hard way after Kenny lost

ALL of his speech, that there seems to be a limit on the number of secretin

INFUSIONS that a child gets. After this happened to us, it happened to a number

of other families. (BTW, Kenny now gets transdermal gaspretin, which does

wonders for him, so it was not the secretin per se, but the way it was given to

him.)

So, I thought the best thing would be to wait this out, and see how other kids

were doing after the treatment. (Kenny can't be the guinea pig ALL the time.)

Had I known about these age projections, chances are I WOULD have gone ahead

with chelation earlier.

When I talked with Dr. Holmes about " recovery " at our appointment, she made it

clear to me that these were preliminary figures. I didn't feel that she gave me

false hopes, nor did she take my hopes away. I left thinking, here's what will

*probably* happen, and if we are really lucky, here's what *might* happen.

BTW, for those of you out there who have not yet met Dr. Amy, I thought she was

REALLY incredible. She's somebody who really knows what she's talking about --

it's very clear that she has done her homework on this. I would like to

publicly thank her for deciding to come back to practicing medicine so that she

can help other kids in addition to her own son! (Maybe we should write to

Newsweek and ask them if they'd like to write up a success story -- I didn't get

to see her son's picture, but I hear he's a real cutie, and would probably look

pretty good on the cover of Newsweek too!)

(Cary, NC)

persistentC@...

Re: [ ] Discussion of prognosis

Dr. Amy and Dr. Jane and everybody:

I am NOT trying to just be a twit or to jerk you around in the way I talk

about Edelson's data. I am trying to keep us all focussed on the first and

most important part of knowledge - understanding exactly what it is we do,

and don't, know.

Andy Cutler

[Guest guest]

Let's put it this way - he has the best data available today. But,

I think we can take what he has and make an assumption that what

we get will probably be better. I hope it is. The point is that

we have nothing else available to work with as far as the removal

of toxins from autistic children.

I think the main reason most of the children were unable to make it

through his entire program was $$$$. I've talked to several

families who experienced this first-hand. Let's face it - his

charges are outrageous at best.

Although I do not like his chelation programs and I think the

use of the sauna really made up for a total lack of safety concerns,

he has provided us with decent data that shows if one gets the

toxins out of an autistic child, there is a chance of

normalization. And because of that fact alone, his data is

very valuable to us.

Amy

------------------ Reply Separator --------------------

Originally From: AndyCutler@...

Subject: Re: [ ] Discussion of prognosis

Date: 07/28/2000 10:15pm

<< His data is still excellent. >>

His data is appallingly mediocre by any legitimate scientific

standard.

He does admit this implicitly by stating that most children don't make

it

through his program and then not providing follow up data on them.

I'm not

criticizing his honesty, and he may well have the best data that is

available. It just isn't very good.

Since medicine is an art, not a science, Edelson's data is valuable in

that

it tells you the one thing you do need to know - there is hope.

However, it

tells you very little else.

Andy Cutler

PS. An excellent example is the claim that DMPS injections don't

cause

adverse reactions even though all reasonable estimates show those

occur with

about 1 patient in 6. This claim is based on those patients who

continue

treatment and doesn't account for those who drop out - which as you

would

imagine includes almost all of the people who have an adverse reaction

to it.

--------------------------------------------------------------------<e

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>-

[Guest guest]

,

You are very kind. I personally NEVER thought my son had a chance

of losing his label - actually he still has a few labels like

language-delayed, etc but does not meet the DSM IV criteria for

autism any more. He now meets the criteria for some kind of PDD,

probably, but I am hoping that he will lose all these letters too.

We still have a long way to go to being mercury-free.

And you are right. When I retired from medicine 8 months pregnant,

I never dreamed I would EVER be doing this. I plan to retire again,

once a lot of our children are OK, then we can all go to

DisneyWorld.

Amy

------------------ Reply Separator --------------------

Originally From: " s " <persistentC@...>

Subject: Re: [ ] Discussion of prognosis

Date: 07/28/2000 11:03pm

Hi Everyone,

Nobody asked for my opinion, but I'll throw it in anyway. :-)

Personally, I am THRILLED with the prognosis that my child who is

" pre-verbal "

and hypersensitive to the world, might some day talk and perhaps live

independently.

Kenny is 7. I haven't given up hope. I'm a fighter. I've been doing

ABA with

him since he was a little over 2. I think the odds are in his favor.

I hope

that two years or so from now, I'll be able to write and say my son

has " lost "

his label.

When I posted about our appointment with Dr. Amy, I DELIBERATELY put

in the part

about the ages, because if I can motivate even ONE MORE PARENT to do

this for

their child NOW, instead of waiting, then it was a good thing to do.

I heard about the " mercury connection " a year ago. I try to stay on

top of

things, and we have done many different treatments with Kenny. He was

Dr.

Horvath's fourth secretin patient, and we learned the hard way after

Kenny lost

ALL of his speech, that there seems to be a limit on the number of

secretin

INFUSIONS that a child gets. After this happened to us, it happened

to a number

of other families. (BTW, Kenny now gets transdermal gaspretin, which

does

wonders for him, so it was not the secretin per se, but the way it was

given to

him.)

So, I thought the best thing would be to wait this out, and see how

other kids

were doing after the treatment. (Kenny can't be the guinea pig ALL

the time.)

Had I known about these age projections, chances are I WOULD have gone

ahead

with chelation earlier.

When I talked with Dr. Holmes about " recovery " at our appointment, she

made it

clear to me that these were preliminary figures. I didn't feel that

she gave me

false hopes, nor did she take my hopes away. I left thinking, here's

what will

*probably* happen, and if we are really lucky, here's what *might*

happen.

BTW, for those of you out there who have not yet met Dr. Amy, I

thought she was

REALLY incredible. She's somebody who really knows what she's talking

about --

it's very clear that she has done her homework on this. I would like

to

publicly thank her for deciding to come back to practicing medicine so

that she

can help other kids in addition to her own son! (Maybe we should

write to

Newsweek and ask them if they'd like to write up a success story -- I

didn't get

to see her son's picture, but I hear he's a real cutie, and would

probably look

pretty good on the cover of Newsweek too!)

(Cary, NC)

persistentC@...

Re: [ ] Discussion of prognosis

Dr. Amy and Dr. Jane and everybody:

I am NOT trying to just be a twit or to jerk you around in the way I

talk

about Edelson's data. I am trying to keep us all focussed on the

first and

most important part of knowledge - understanding exactly what it is we

do,

and don't, know.

Andy Cutler