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