The fear of missing important autism info/treatments

[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.

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.

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?

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

huge motivation to pursue an alternative approach. 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.

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? 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.

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.

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

boards to post new ideas, treatments, outcomes, we need people who

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

everyday, and to express those opinions here. I not only welcome

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