Re: The fear of missing important autism info/treatments

[Guest guest]

Moria has already done this - its in the files for peeps to fill in but

nobody has done it in ages...............maybe I will do it again. Round 70

DMSA/ALA next week and then we switch to TD DMPS..............

Mandi in UK

Regarding the bit I quote below, would it help if you posted a list of

things to include on a progress report to the files section? The form

could list all the things needed to assess information, things like

*other* meds/supps taken, diagnosis, tests & results (if any), chelating

agent & dosing schedule etc. And of course the condition of the child

before a particular intervention, and the gains and/or adverse reactions

seen.

[Guest guest]

> The recent threads about this board, chelatingkids2, and other boards

> and the intensity of those discussions, I believe is really about all

> of our fears that we are missing something that could help our

> children. There is a desperation that time is slipping by. Even 2

> years ago when I started on this board the amount of info was

> manageable, options were limited, so making a reasonable informed

> decision didn't take to long...now the alternative treatments, ideas

> etc are staggering.

>

> We had a saying in medical school " learning medicine is like drinking

> water, everyone can drink water but now imagine someone put a fire

> hose in your mouth turned it on full blast and said drink " This is

> the feeling I have now and I have medical training.

This is the difference between training and education - which is the

root of the problem. Medical training is not education.

Education is the intellectual equivalent of a vigorous swim in a calm

pond.

Training is the intellectual equivalent of getting blasted by a fire

hose.

Education lets you practice, play around, learn the skills of doing

what you want and figuring things out. People who get educated always

whine when they get to the job market that they take the first year or

two on the job figuring out what to do and they should have been taught

taht in school. But they always figure it out, since they were given

the skills to do that.

The skills mostly consist of how to regularize knowledge by comparing

and tying it in with other existing knowledge. This is not done during

training which means people who are trained rather than educated see

everything as complex, not related to other things, and can't

prioritize them. E. g. the myriad harmful and inappropriate chelation

protocols out there are a consequence of medical training rather than

education.

> So when I hear someone is not posting info here (this is my main

> source of info)I freak out. So the balance of getting info on the

> board versus heated discussions about treatment topics which make

> people not want to post here is hard to handle.

Partly I think the topic is being exaggerated to jerk you and others

around, since the point of the whole exercise in sophistry is to do

that, not to convey information.

However, some people may be inhibited by things I say (or that others

pretend I say) so let me be clear on what I do:

If you talk about your experiences, I will be glad to hear it.

If you try to convince other people to do things based on your

experieces without regard for other experiences, expect me to " trash

out " on you adequately to get others to think before doing what you say

since I really don't want any more kids to get hurt by frivolous and

unnecessary experimentation than is necessary.

I have learned by experience - something that education prepares one

for but training does not - that a fair amount of emotional heat is

required in messages that are going to affect what people do with their

kids based on doctor's orders or the perception of approval by some

" important doctor. " So I no longer present a dispassionate analysis of

facts when I wish to influence behavior, I use invective. It works a

lot better.

Another thing educated people learn is that most new discoveries really

are made by people who are trying random things without much

understanding of what they are doing. Thus an educated person does

want to hear a broad cross section of what people are trying - the

concern being expressed here - rather than rely on one point of view.

Indeed I also want to hear this, just note my caveat regarding the

difference between my response to presenting information and my

response to motivating people to do things.

One further thing that used to be a part of education and many people

still learn is rhetoric. Thus I recognize what people are trying to do

at times from the manner in which they argue. Rose is just trying to

earch around and find some argument that upsets people here and gets

them to complain about me. It sounds like she has been creative enough

to find a raw nerve in this issue of what isn't on the list (which of

course must be MY fault since it involves the behavior of other people

- what they do or don't post).

How about instead of playing along with Rose's game here, people who

are concerned about information that might not be making it onto the

autism mercury list all get together, split up the other lists among

themselves, and occasionally provide us summaries of the interesting

material from those lists that hasn't been discussed here? How about

instead of letting Rose organize a game of " let's you and him fight "

where Andy and other people on the list argue about what is and isn't

on the list, everyone brings real information to the list and ignores

people like Rose who want us to expend our energies fighting with each

other instead of trying to help sick kids get better?

> I have a very simplistic view about Andy's comments and what I

> believe his philosophy is. ALA with either DMSA or DMPS given on a

> dosing schedule based on the typical drug 1/2 life (assuring a

> constant drug body level) is the safest protocol which appears to

> chelate metal and give positive improvement in our kids or ourselves.

> So why mess with the safest most successful approach?

People who aren't educated have no perspective and get very emotinoally

involved in domninance games about who the TRUE LEADER is, and for them

it is all a matter of fad and fashion, science has nothing to do with

it since they aren't capable of understanding how one area of knowledge

relates to another. Thus when their favorite protocol is declared

" inferior, " their response is similar to what you'd get if you told

them their make up looks really ugly and they should just skip it next

time.

> Obviously if the above protocol didn't work for a child, that is a

> huge motivation to pursue an alternative approach.

And indeed in those situations I tell people to try alternative

approaches and work with them to try to find one that helps. E. g.

there have been situations where I suggested TTFD (and unfortunately in

some of them there were horrible adverse reactions), DMSA every 8

hours, the use of cilantro, etc.

> If the side

> effects, cost or inconvience of the protocol makes it impossible to

> use, that is a motivation to find an alternative approach. As we

> learn more about what causes autism and a better approach appears

> that should be explored and used.

Yup.

But our rate of learning is actually glacially slow at present, which

an educated person recognizes but trained ones don't - there is a lot

of making random measurements that happen to be easy, no hypothesis

forming and testing (that is, no scientific experimentation), and all

the interventions being touted as new are actually retreads of ones

faddish in the adult detox community or elsewhere long ago.

3-4 hour dosing and transdermal DMPS are the only 2 I know of that

don't have antecedent at least 10 years old.

> But the following questions have not been answered by any alternative

> treatment that I have researched. Why use a dosing schedule not based

> on the known half life of a drug?

Recall, trained people (technicians) have no perspective and no sense

of the connectedness of knowledge. It never occurs to them that this

is relevant unless they are trained that it is. Most relevant

pharmacology is omitted in med school on the theory that the drug

companies will figure it out and send reps to tell the doc's how to Rx,

and the time saved can be devoted to crucial topics like diagnosis.

> This is not a aurgement that

> different schedules don't work or are more convienent, but why would

> you use a schedule that has a potential to cause a problem when the

> other has less potential to cause a problem. Why use a drug with a

> narrow theraputic thershold when there are a safer alternative?

> Theraputic thershold is the distance between the good effects of a

> drug and the bad effects. The perfect drug has a large theraputic

> thershold. TTFD appears to have a low theraputic thershold, I am not

> aurguing that it does or doesn't work, I am saying compared to other

> choices the distance between a good effect and a bad effect seem to

> be close.

More properly, the toxic threshold and therapeutic levels vary from

person to person. In some people the toxic threshold is lower and they

get poisoned before they get any benefit. Others get some benefit and

some toxicity. Yet others get benefits and minimal toxicity.

The issue is risk and benefit, and the tradeoff here is the same with

anything else horribly toxic - try the nontoxic alternatives first!

> I think Andy can't understand why people don't see the logic of the

> above and maybe because his outlook is not tempered by having a child

> with AS, this leads to some of the discussions.

I understand it just fine, and have enough direct personal experience

with AS children to " get it. " I have simply learned what forms of

argument work. Generally invective works. The parents are far too

emotional for dispassionate reasoned prose to get through their anxiety

and agitation so as to engage their reasoning faculties. Invective does

the trick. The fact that some people don't like it is immaterial to

whether it works or not.

> Long story short... This board needs people who have access to other

> boards to post new ideas, treatments, outcomes,

Yes.

Things I would specifically like to see:

discussion of the use of prednisone at high doses (I know this is done

and sometimes helps),

Compilations of response to this or that agent, specifically giving

what the kid was like (so we can figure out who it might work for),

what exactly happened, what improved, what didn't, etc. for a lot of

kids. Actually adult reports are also very helpful since adults can

describe how it felt. Good and bad reports are also quite helpful.

Whatever worked for kids known not to respond to chelation, and/or to

have normal hair tests.

Any information on any protocol or agent from which some kind of

statistics can be estimated regarding positive and negative response.

Anything involving neuropsychiatric or cognitive testing and its

response to biochemical interventions.

Specifically anything regarding correlation of lab test results with

need for or success of dietary interventions.

> we need people who

> have the courage to have an opinion about an area which is evolving

> everyday, and to express those opinions here.

As discussed above, people also should find my response reasonably

predictable: interested discussion if it is presented informationally,

invective if it is a dangerous and harmful intervention presented in a

manner chosen to motivate people to try it inappropriately.

> I not only welcome

> these posts, I need these post for my mental health.

Stop letting Rose mess with your mental health to advance her own

agenda. Just view this as a professional task and help people get

organized so they dig up useful information.

Of course, if I keep offering the same criticism and keep having it

ignored I will " turn up the volume " as I did with . You really

don't have to worry about me doing that the first few dozen times you

post.

> And the reason I

> said those people need courage, is that a benefit of this board is

> that new treatments and opinions do go thru a rigorous examine here

> and people will point out the warts, but in the end I think this is a

> proven method for figuring out what is good, bad or indfferent.

Yes. This board is in some ways attributed (rather than anonymous,

which is corrupting) peer review.

One further issue regarding education versus training: the educated

person separates their ideas and conceptions from themselves in an

emotional sense so that critcism of the ideas is not personal - the

ideas can be wrong and often will be, which does not reflect on whether

the person holding them is good or bad. People with less perspective

get more personally involved in the ideas and thus can't abandon them

when appropriate.

Andy. . . . . . . . . .

[Guest guest]

Hi Andy,

Regarding the bit I quote below, would it help if you posted a list of

things to include on a progress report to the files section? The form

could list all the things needed to assess information, things like

*other* meds/supps taken, diagnosis, tests & results (if any), chelating

agent & dosing schedule etc. And of course the condition of the child

before a particular intervention, and the gains and/or adverse reactions

seen.

To improve clarity you could have tick boxes for simple items, and room to

fill in more details and separate room for things not covered by such a

list.

In fact, it would be pretty easy to make it a webform that would be easy

for people to fill in, if you are interested to receive such information

in a standardized manner. I'd be willing to set such a thing up web-wise,

if you give me a list of the items you want on it. It can be as succinct

or detailed as you want.

If one set up such a webform to mail the information back to listmembers

they can then forward to this list. The advantage would be the

standardised formatting, and the attention to detail. It's easy to forget

to mention relevant stuff, or people might not realise which information

is relevant or not. A standardised form (with plenty of room to report

things not covered by the form) would help with that.

regards,

On Tue, 16 Nov 2004 20:46:24 -0000, andrewhallcutler <AndyCutler@...>

wrote:

> Things I would specifically like to see:

(snip)

> Compilations of response to this or that agent, specifically giving

> what the kid was like (so we can figure out who it might work for),

> what exactly happened, what improved, what didn't, etc. for a lot of

> kids. Actually adult reports are also very helpful since adults can

> describe how it felt. Good and bad reports are also quite helpful.

>

> Whatever worked for kids known not to respond to chelation, and/or to

> have normal hair tests.

>

> Any information on any protocol or agent from which some kind of

> statistics can be estimated regarding positive and negative response.

>

> Anything involving neuropsychiatric or cognitive testing and its

> response to biochemical interventions.

>

> Specifically anything regarding correlation of lab test results with

> need for or success of dietary interventions.

[Guest guest]

The problem is that it is hard to get people to provide all that

detail, and we don't know what we are looking for until we see it

(usually a long time after we see it and repeatedly miss it).

The most basic things we want to know are:

What are the characteristics that predict an intervention will work?

What characteristics improve, how much, what gets worse, etc?

What are the problems that occur, and the adverse reactions?

How long does it take the intervention to work, and how long for

problems to wear off if it is stopped?

The place for real preceision is in exaclty how the intervention was

used (e. g. the myriad people who think " chelating with DMSA " is an

intervention and make general statements that pretty much have to be

ignored unless you can track them down and figure out the protocol they

used).

I don't think a webform is useful. I think members of this list who

see interesting stuff on other lists and compile it to share with us is

what will be useful.

Andy . .. . . .

> Hi Andy,

>

> Regarding the bit I quote below, would it help if you posted a list of

> things to include on a progress report to the files section? The form

> could list all the things needed to assess information, things like

> *other* meds/supps taken, diagnosis, tests & results (if any), chelating

> agent & dosing schedule etc. And of course the condition of the child

> before a particular intervention, and the gains and/or adverse reactions

> seen.

>

> To improve clarity you could have tick boxes for simple items, and room to

> fill in more details and separate room for things not covered by such a

> list.

>

> In fact, it would be pretty easy to make it a webform that would be easy

> for people to fill in, if you are interested to receive such information

> in a standardized manner. I'd be willing to set such a thing up web-wise,

> if you give me a list of the items you want on it. It can be as succinct

> or detailed as you want.

>

> If one set up such a webform to mail the information back to listmembers

> they can then forward to this list. The advantage would be the

> standardised formatting, and the attention to detail. It's easy to forget

> to mention relevant stuff, or people might not realise which information

> is relevant or not. A standardised form (with plenty of room to report

> things not covered by the form) would help with that.

>

> regards,

>

>

>

> On Tue, 16 Nov 2004 20:46:24 -0000, andrewhallcutler <AndyCutler@a...>

> wrote:

> > Things I would specifically like to see:

> (snip)

> > Compilations of response to this or that agent, specifically giving

> > what the kid was like (so we can figure out who it might work for),

> > what exactly happened, what improved, what didn't, etc. for a lot of

> > kids. Actually adult reports are also very helpful since adults can

> > describe how it felt. Good and bad reports are also quite helpful.

> >

> > Whatever worked for kids known not to respond to chelation, and/or to

> > have normal hair tests.

> >

> > Any information on any protocol or agent from which some kind of

> > statistics can be estimated regarding positive and negative response.

> >

> > Anything involving neuropsychiatric or cognitive testing and its

> > response to biochemical interventions.

> >

> > Specifically anything regarding correlation of lab test results with

> > need for or success of dietary interventions.

[Guest guest]

Dear ,

I am not Andy, but feel compelled to respond to this, since

I have created such a format, at least for chelation, and

have had it available for over 2 years now.

http://home.earthlink.net/~moriam/Survey_directions.html

http://home.earthlink.net/~moriam/Survey_form.txt

I would admit to several issues and imperfections with this

format, but I would also point out that there has been

extremely little use of this format, so I have not been

terribly motivated to fix the handful of nit errors

I'm aware of, nor to make it whizzier (e.g. as a webform

or tabulated survey).

If Andy has other ideas of what would be good " in general "

(rather than for chelation), that is another topic.

Also, for other readers, you can use the format I made

for ANY method of chelation, including standing on your

head if you think that works. There really are not any

criteria (other than that you have used the method for

at least 1 month, or have used it for a shorter time and

abandoned it already.)

Also, you can fill out as much or as little of the " survey

form " as you wish--- if there are questions you would rather

not answer, you just skip them.

Any questions about the use of this format, please ask!

good wishes,

Moria

http://home.earthlink.net/~moriam/Survey_directions.html

http://home.earthlink.net/~moriam/Survey_form.txt

> > Things I would specifically like to see:

> (snip)

> > Compilations of response to this or that agent, specifically

giving

> > what the kid was like (so we can figure out who it might work

for),

> > what exactly happened, what improved, what didn't, etc. for a

lot of

> > kids. Actually adult reports are also very helpful since adults

can

> > describe how it felt. Good and bad reports are also quite

helpful.

> >

> > Whatever worked for kids known not to respond to chelation,

and/or to

> > have normal hair tests.

> >

> > Any information on any protocol or agent from which some kind of

> > statistics can be estimated regarding positive and negative

response.

> >

> > Anything involving neuropsychiatric or cognitive testing and its

> > response to biochemical interventions.

> >

> > Specifically anything regarding correlation of lab test results

with

> > need for or success of dietary interventions.