I'm having a difficult time with the hardliners who believe in dhelation as well. They insist it has helped. I have two things I like to point out: first, the treatment didn't occur in a vaccuum, so how can anyone be sure it was "this" treatment that brough about the perceived improvement and second, what methods has the family used to determine that their child was, in fact, exposed to mercury?
When parents are considering it, I've found I can't defeat the true believers, but I CAN ask the parents to determine from the evidence around them if there is any real likelihood their child has even been exposed to mercury. Check the lots on the vaccines. A child who is 3 year's old today simply isn't likely to have been exposed through a vaccine, AT ALL. A little detective work and you know the answer. Concerned about dental fillings? Find out what kind were used (our dentist doesn't even use the kind that has mercury in it). Concerned about Tuna? Look for data on the brands you consume. I hear of parents considering chelation without realizing for a second that the whole basis of the process is a mercury poisoning theory. If your child wasn't exposed, your child wasn't exposed, and you KNOW it would be hocus pocus. And that bizarre mouth air test the doctors use ... well, it sounds wholely unreliable to me. Take that test and we're ALL sick of metals poisoning. Which we know we aren't. So, I think it's practical for parents who believe in this treatment (which I don't) to at least do a little homework first, and find a reasonable explanation of HOW their one child could have GOTTEN the theoretical mercury poisoning. So, that is what I've been asking of parents who believe in this route: find out how your child could have gotten the metals.
I don't even think there has been any conclusive evidence to show that people were poisoned by having amalgam fillings. It was a good money spinner to get people all panicked about their fillings and so go to the dentist and get them taken out and new ones put in.
It also reminds me a bit of the hysteria some people take on with about fluoridated town water.
I am curious as to whether people first have themselves tested for an unacceptable level of mercury - before being subjected to some cleansing process or other. On that note, are there data on "unacceptable" levels or how long it remains in the body? Lest we forget - amalgam fillings.
I've read basically what tenacious posted - that the whole fillings thing turned out to be false.
The test people are using to determine metals poisoning is some sort of air or breath test (I'm not an expert on this, so forgive if I'm off a bit on a few details). Apparently mercury doesn't show in the blood, so it can't be tested for that way. And the only really accurate test, a liver biopsy, is undesirable and impracticle. The test they do use, really, sounds like wacko science to me. The logic behind it is truly bizarre, and I have yet to see someone post that they tested their child this way and were told the child did NOT have excessive metals.
Yes, it's just quack medicine at its worst.
So, not only are they misguided but they are also fraudsters! :evil:
firefoxy, I'm not as close to this as you are, but I will say that what appears to be regression is typical of the autistic spectrum. I saw it with my son, and it most certainly (because of the dates) had no correlation to his vaccines.
I do think the severity is influenced by a combination of factors, including environmental, and I'm not about to rule out the possible effect of toxins and even metals. But I haven't found a reliable way to get at this. The tests I've read about make no scientific sense to me and, honestly, I am not going to believe them unless someone can show me someone who was tested and given a NEGATIVE result. No accurate test would show that everyone tested was positive for the toxin. Not unless it is actually supposed to be in our bodies and not a toxin at all.
Sitting and watching and observing and reading I am slowly coming to the conclusion that among the factors causing an increase in autism are:
(a) Increased severity - cases that would have otherwise been missed are more obvious.
(b) Increased diagnosis - YES, that would account for a huge increase, and all you have to do is look at how many adults are realizing they are autistic to understand that it must be a major factor.
© A modern world that is drowning in excessive stimulation - most autistics have sensory issues, and our world is more sensory rich then ever, but not in a positive way. When an autistic gets overwhelmed by sensory input, they defensively start to turn the sense off - that may sound wierd, but I've SEEN my son do it. I was able to turn it back, but the shut down process was there. And, it is this shut down process, I believe, that at least contributes to the sense of regression. Similar to the way allergies develop in children, perhaps. I do think environmental toxins could contribute here, but they aren't the whole of the process.
Studies have been done that show there is not a higher rate of autism in children who have been vaccinated than in those who have not. The statistics are solid.
I don't know how to "get your son back." But I did read a very moving piece by an autistic whose parents used to want the same thing. What the autistic wrote was that was lost was not the person, but the parents projection of how that person was going to grow and develop. Autistics take a different route, one we totally don't expect.
I do think there is a lot to be said for seeking out and removing anything that could be causing your child distress. We recently changed my son's diet because of constipation issues, and I've recently realized that his new found maturity correlates to about the same time his health was improving. He still thinks using Aspergers patterns, but he is a lot happier, and easier for people to get along with.
The right answer may well be, "all of the above." But I don't think the world can get there as long as it keeps providing very bad science.
firefoxy, perhaps you should re-read what I wrote. I didn't post any definitive conclusions, just concerns and considerations. I never said, "I'm right, you're wrong," although you seem to think I did.
Well, at least I did not intend to. Things I write don't always read the same to me as they do to others. Tell me what I said that got you mad and we'll talk about it.
I am honestly leaning towards a genetic PREDISPOSITION that may be TRIGGERED by environment factors. To me, it isn't that extremely different. Just not as absolute. Life is complex.
PS - the major dietary change we made with my son is taking soy out of his diet. That may sound wierd, but my husband has Hashimoto's, and he's been researching soy - for some people, it can have negative side effects. Since my husband feels better without it, we started quietly taking the soy products out of my son's life. It's wierd, but my son's regression can actually be almost tied to when he started eating a certain soy product regularly. Coincidence, maybe. Or maybe not. But, he doesn't need that product and I'm inclined to leave it out. I do believe he was always on the spectrum - he's been unique since birth, mostly accelerated in development, actually - but the "frozen in time" regression observation with him came when he was 3, and we would never in a million years have thought he was on the spectrum until we were handed the tentative diagnosis when he was 7. The thing is, our world is full of stuff that no one properly understands. I think we need to be looking at ALL of it. I don't think the drug companies have enough power to have created the kind of conspiracy needed to cover up a major cause and effect relationship, and they HAVE taken thimerisol out, at least here. But, that doesn't mean a vaccine couldn't cause an adverse reaction in a particular child. Shoot, if I'm thinking simple soy might have made my son's symptons worse, why couldn't a vaccine? I guess I worry that in latching onto to one item, others could be missed. That we each fail to take a complete look at the unique environment of our child and to find all the possible stressors.
I did some editing while you were posting
I am sorry that you feel your world is crashing around you. You know, I've been there. Sort of - not to the same extent, I don't think. I cried a lot of tears before they figured out my son had Aspergers. I couldn't understand how the child everyone had always told me was born gifted and brilliant could be struggling in preschool and K. How the baby who loved people could be having social problems. It didn't make sense. But, the pieces fit for me now. More or less.
With my son, the single largest factor is controlling his environment. I guess you could say he is more fragile than most. Things affect in ways that I can't understand, often when they seem totally innocent. I keep my eyes on the triggers. Controlling the triggers helps him so much.
I know politicians are corrupt, but in an internet world the proof gets out there. I'm just not finding it, on the mercury. But, SOMETHING is going on. A trigger. That one wouldn't suspect. But, to my eyes, more likely it is one that takes a child that would have been so midly autistic that you would never have noticed, and affects them so negatively they appear more severely. That study I referred to, I don't think it measured severity. Just occurance. If there is a relationship, it makes a lot more sense to me, intellectually, to attach it to severity.
It isn't really my issue, because I see the genetic factors so clearly in my family, but with such strong believers on both sides, I've felt compelled to look into it. If I could read that one parent, one single parent, had their child tested and was told the results were negative, I would be more inclined to have faith in the methodology used to test for the metals. But I haven't. It's always, "sure enough, the levels were off the chart." The odds are against that result, it seems to me. Still, there are all sorts of "miracle" stories parents post. About a whole spectrum of things. Not usually the same thing. I'm not seeing a single pattern there. But, a general sense that if you can find the things that are stressing and upsetting your child, your child will get "better." I don't think your child stops being autistic, but your child stops living behind the wall that makes you feel he's lost.
I think you have to look carefully at what your child has been exposed to, and what has occured in his life. Methods advocated by other parents can be useful guides, but they don't hold a single truth that is certain to work for your child.
I can't begin to tell you how much difference it made for my son simply getting a name for what was going on, and having an appropriate IEP written for him. Everything changed. How teachers handle him changed; how I parent him changed. As a result, he isn't battling a world he can't understand any more. We're meeting him half way. And, for him, it has made a HUGE difference. HUGE.
Anyway. It's the middle of the night here. I couldn't sleep. And I'm totally rambling. Just, look at your child. He holds the answers. Find them. I know it's not that easy. The triggers aren't always clear. But finding them and controlling them will make things so much better.
That's interesting, firefoxy. Are you comfortable you have the right diagnosis? I know that's a wierd question, after all the experts you've probably seen and the extensive surveys you've probably answered. It may be difficult to tell at this age. Was there one thing that made the experts feel ASD was the right fit?
Some of the things I've noticed that seem to be fairly consistent accross the spectrum (albeit not universal, nothing is - and this is NOT scientific, just my observation):
Some type of repetitive motion, nervous habit, or stimming, used for self calming (my son used to chew, but now seems content with just his pacing).
Some sort of ackward physical trait (my son has always held pencils, forks, etc in a rather twisted manner, and walks crooked - I don't have a better word for it, but he isn't straight up and forward).
A lack of interest in certain things most kids care about, like fashion or trends.
Difficulty seeing things from / being interested in another's point of view (although, that is normal for preschoolers).
Difficulty making transitions, ie moving from one activity to the next.
Some sort of hyper sensory sensitivity (officially a separate diagnosis, sensory integration dysfunction, but they seem so very interrelated); may be either a sensory seeker or sensory avoider (my son is a seeker on physical contact; avoider on noise).
--
At 3 and 4, my son used imaginary play as an avoidance technique. When he wasn't comfortable in an environment, he became an invincible super hero. He would totally move into that world; it was complete. Yes, it seemed like a total change, and it was extremely difficult to connect with him and pull him out once he was in that mode. But it WAS avoidance. The more I watched, the more I discovered the triggers. They aren't always immediate; they can be cummulative or delayed. He doesn't do it anymore. He hasn't for a long time, actually, now that I think about it. He has learned to express his needs, to avoid the triggers, and he regulary goes into his pacing routine (which has an intense fantasy element to it) to calm himslef, but is able to save that for appropriate times. He doesn't like to be disturbed when he is pacing, but since this is almost scheduled now, that's OK, if I'm making any sense.
ANYWAY, I hope you can find a way to help your child be himself. That is all he has to be - himself, happy, and comfortable. What we think should be doesn't matter. I know you know that. I've let a lot of things go as a result of the things I've learned from this forum. Like the pacing. I now understand it is something my son needs.
Firefoxy, I should mention, when talking about things like preschool ... sometimes what your child is attracted to is actually something he can't handle. My son is that way about travel. LOVES it. But I started to notice a pattern - after a trip, we always had HUGE behavior problems. Now he recognizes his own limitations. We still travel, but we take things a LOT slower, and try to keep one home base for each trip. I have another friend with an ASD son who loves amusement parks, but at the same time has a difficult time processing the environment. He holds it together all day there, but usually breaks down at home. Point being, you can't assume that because your child likes something, that it isn't contributing to his need to "check out." It might be. It might not be, but it might be.
Actually, I don't understand why chelation therapy has killed people. Did they get poisoned by the therapy?
It's pretty scary that these quack therapists using such methods can get them past the FDA. I suppose they've exploited some kind of loophole in the legislation.
Shame they couldn't shut all of them down (the ones using these dodgy therapies I mean) :mad:
It's just greed from the purveyors of such therapies. The parents would be better off putting the money into getting the kids some things they like and ignoring these quack therapies.