Hi Squid,
I read the link you provided to your father-in-law's
comments. Boy, this really puts you
guys in a tough position. I don't envy
having to deal with family disagreements on TOP of the pressures you've been
dealing with already, of figuring out the best chances for Leelo.
His comments were interesting, but mostly nothing I
didn't already know.
Yes, this is a consensus paper and not a scientific
symposium - it's not a study, either.
I don't really care what name this movement is
given, for example - FOAML (Figure Out Autism Maybe Later) would not give me
any scientific evidence for or against the methodology or potential of a
treatment. Although TNHYIGU (There's No
Hope You Idiots Give Up) might make me pause.
Actually, that does seem to represent the attitude of a lot of the
medical community.
Yes, similar symptoms between autism and mercury
poisoning do not prove they are the same. Makes it a damn interesting theory,
though, doesn't it? Especially if the
autistic child has high mercury levels.
and... I don't think anyone has yet tried to argue that high levels of
any heavy metal are beneficial to a young child. or adult, for that matter.
Yes, the physicians involved in the paper have
treated their own children. Sure
parents may be willing to grab at straws.
But with these parents, their background and training as doctors surely
is a plus, right? Wouldn't you think
they would be less tempted to fall for quackery? less tempted to take dangerous risks for very little potential
gain?
Yes, the majority of the physicians are using
supplements and chelation. The supposed
halo of "the scientific method" I have to believe is used in your
father-in-law's arguments as meaning "thoroughly researched, tested, and
already fully accepted in the medical community." Because there have been plenty of studies on
food supplements. And B6.
The issue about how medicine and dentistry (is your
father-in-law a dentist?) work to have "gold standards" of
methodology is an odd point to make against a paper describing a large group of
professionals attempting to work out a solid methodology. Something has to be in place a while before
there can even be a wide variety of methodologies, certainly before you can
then smooth those into something widely accepted. And the fact that the current medical community has NOTHING in
place to offer autistic children is a severe problem - railing against any
alternative methods for treatment while having NOTHING to recommend instead is
not impressive.
And the risks of chelation... the scary (if rare)
possible side effects... well, yes, I agree with your father-in-law there. I wouldn't want anything bad to happen to my
child. I don't want her bone marrow
suppressed, or to develop some nasty condition of her skin. of course, pretty much any medical procedure
has the potential for nasty side effects.
Over 6 Tylenol can do severe damage to a liver. And look at anesthesia! You would never want to take even a small
risk of such great impact, unless you were weighing it against a greater
risk. Like, say, a permanent
disability.
The safest way to go is to do nothing with our
kids. Then there are no side effects
from supplements or treatments. Even
Lovaas's documented work, carefully planned out and observed and analyzed by
every IQ or behavioral test and blind-evaluation available, and confirmed by
later studies, is still not completely accepted in the medical community
(remember our pediatrician’s nurse’s initial description of it as something to
avoid, and our regional center’s psychologist initially telling me it was “very
intense, too intense for such small children” (and of course now my daughter
lives for those sessions). And god knows it would be cheaper (at least in the
short term) not to try any of this stuff (over $6k a month for the behavioral
therapy alone), and much easier in daily life not to find ways to force those
supplements in. I’m willing to look at
anything - and try anything that is well-documented by professionals and
doesn’t pose an unacceptable risk. The
GFCF diet seemed a silly idea and damn hard to implement, but 36 hours after
taking Sophie off dairy we had noticeable positive results, so we reluctantly
proceeded with that tough diet plan.
ABA/Lovaas therapy looked incredibly expensive and sounded like it could
be spirit-crushing - but it had the most scientifically documented results, so
we tried it. I hovered like a guard dog
in the sessions and our therapy turned out to be gentle and loving (but still expensive). There’s other avenues we’re looking at
implementing as well. All
time-consuming, some expensive.
I don't have a real good handle on surety when it
comes to some of these treatments. I
just feel like I have a real good handle on the effects from doing
nothing. And those are the most scary
of all.
Squid, I want you to know I will fully support you
and your family in whatever way you decide to work with Leelo. If you chelate, if you don't - I know you
will make the choices you feel best for Leelo.
I'm blundering along the same path, and I too will have to live with the
consequences of what we do and don't do for Sophie. who knew, for example, that all that preventative medicine I made
sure she got (every vaccine they offered me) would be called into question
years later. it will be years, I’m
sure, before I find out what guilt I have to live with there. Then, we may chelate her and have her be the
first ever autistic child who convulsed and died after her first intake of
DMSA. I just don't know what the
ultimate outcome of any of these methodologies will be. we're all just doing the best we can.
The best I can do is research everything I can find,
sift out the wheat from the chaff. And
make the most responsible decisions I can - based on information from
professionals (doctors, psychologists, speech and occupational and behavioral
therapists, etc.) who are actually willing to try to make a difference for
these kids . What I can’t do, what I
won’t do, is accept the current medical community’s stance that autism is
incurable, give up and have to farm Sophie out to some institution, as she gets
older and can still only function at a 2 yr. old level. That’s just not acceptable. If she doesn’t get better, and that’s what
ends up happening, it won’t be because I was too lazy or too opinionated or too
conservative. I’ve been a firm believer
in western medicine, but the current medical community has failed her and every
other autistic child. So we’ve had to
look elsewhere. And with what I’ve
found so far, she is getting better. And seems to be going through the process somewhat happily. That’s my feedback we’re on the right
track.
MB