Samantha - chelation question
Find a Conversation
| Wed, 07-12-2006 - 10:53am |
Samantha,
Went to Mike's doc again yesterday and she is again recomending oral chelation for him. I have always been resistent but I think it is at least worth looking into but I wanted to check some of what she told me.
First, she said she would be doing a mild oral chelation that was more like a detox than anything and for that we wouldn't have to do any testing. Does this sound accurate? She probably meant didn't have to test for the sake of safety, but shouldn't we be doing tests to at least be sure that is what we are supposed to do?
Also, My DH is dead set against the idea of immunizations causing autism, mercury, the whole lot. He used to believe it but since a couple of highly publicized reports saying vaccs are safe came out he doesn't even listen to my arguments. My thought is that there are loads of ways for kids to get junk in thier systems.
Do you know of ANY studies which show the effectiveness of chelation? Any scientific double blind study would be great.
Thanks,
Renee


Hi Renee,
Samantha will know more I am sure, but I remember seeing something recently about the first double blind study of chelation going on right now. It isn't finished yet. I think I saw the story on Dateline, I know it was on NBC. Maybe it is still on the website, it was pretty recently.
I think it was being conducted somewhere in Arizona? Southwest College maybe? One of the researchers was Jim Adams, I think.
I went to a talk by a DAN doc and his idea about testing was to do kind of a "challenge" test. Give a chelator then collect urine to see if metals came out. If this worked, he would go on and do further rounds. He did not like transdermal and preferred oral or even IV. Scary to me, but interesting. He said mercury wasn't the only metal, that he had many kids with just as much trouble with lead.
He emphasized getting the child healthy before doing this and the importance of monitoring the liver especially, I guess this is hard on the liver.
I bet the DAN website has information on other articles. Maybe I'll check too.
Interested what Samantha knows.
Katherine
Hi again,
Thanks for bringing this question up, Renee. I found a really interesting paper on the DAN website. It is kind of a position paper on "best practices" for chelation but it goes into all kinds of things, including the ways you can be exposed to metals besides vaccines. It has good info on nutrition, different types of chelating agents.
It's fairly recent, 2005. Not a "study" but what some of the best known DAN docs think about the topic (Rimland, McCandless etc.). It is mostly informational. There is a pdf of the paper here:
http://www.autismwebsite.com/ari/vaccine/mercurydetox.htm
I'd definitely recommend reading this if you are considering chelation. I learned a lot from reading it too!
Katherine
The lead issue is one that has always been of interest to me. You see where my kids where first born and raised in MA has a very high level of lead in the dirt and dust. We had a home nurse come visit after I think Mike was born as a service from the hospital. She had told me about this and to make sure to wash the kids hands regularly as they could ingest it just by getting into dirt outside. So I was always good about it, but.... sometimes you miss. And my kids loved to play outside.
In MA it was general practice for all kids to have lead blood tests at 1 but not after. Plus I didn't know diddly then. We just heard the test was fine, well what does "fine" mean. How much was there? What if they did have a genetic predisposition to not getting rid of it in thier bodies and even a smaller amount than normal was dangerous. What if they got into it more after?
We moved out of MA when Emily was 18 months. Still prior to that age when they roam outside and get really dirty. All of my kids have quirks and are obviously genetically predisposed. Why are only 2 of my kids really affected?
Maybe I can convince john to at least test thier hair for lead. And then chelate based on that since it is FDA approved for lead.
Renee
Well I know from what I have read that lead poisoning can cause long term problems like hyperactivity, behavior disorders, learning disabilities and mental retardation. Even lower levels of lead can cause chronic problems from what I read. Probably over a longer period. I found that right on the CDC website. I once knew a boy in MA who had severe lead poisoning as a toddler. He was non-verbal, hyper, sweet but met nearly all the classic symptoms of an autistic.
I think that chronic lead poisoning could theoretically look like autism spectrum disorders easily based on that. I know I was supposed to get the kids lead rechecked at 5 but we moved out of state right when Cait had turned 5 and I never had it done for either of them. I didn't know then that it was a state thing. So I asked out here and they said they don't do that at 5 and I just figured it was one of those things and I didn't mind my kids not getting stuck again so I didn't make an issue out of it.
I couldn't find however, any treatment for lead poisoning after the fact. I know chelation is used for really high levels but I think that is when the child has just had the exposure. I think in our case the damage is done (and it is about killing me reading through that stuff). Not sure what chelation will do for us at this point if indeed the culprit was lead at our home 7 years ago.
That is some of the info I want to find out about chelation. I think that if the metal poisoning is current I could see it helping but what does it do when the neurological damage is already done? It doesn't heal the neurons it stops the metal from doing any more damage.
Oh well, probably likely good to do levels anyway. Perhaps to make sure nothing is currently affecting them. We're still living in an old house.
Renee
Katherine.....I saw the same special.....it stated that he (Adams) was conducting the first double blind study on chelation. That special also raised an interesting point that I have yet to hear about......Adams (I believe that was his name) has a 14 yr old autistic daughter. He has had her on all the supplements and also through chelation but she has had no improvements.....he is assuming it is because of her age.....maybe he started all of this for her too late.....I'm wondering what too late is? Has anyone heard if there is an age range that is suggested for starting chelation at? What would be too young? What would be too old? Just curious if anyone knows or has an opinion.
My guy was tested for lead poisoning when he was chewing on everything.....it came out negative.
Christie
I think that is the point I was getting at. If it is heavy metal type poisoning from earlier in thier lives that has already done neurological damage I don't think removing the metals at this point would reverse the damage IMHO. I am not a scientist, just a thinking simply.
I reminds me again of "Lorenzo's oil". They found how to stop the damage of teh disease but the neurological damage was done. Different things had to be done to reverse the damage. Things they are still working on (remylenation).
I also liked in there where the dad often said "I am just a simple man looking for simple explanations". I feel alot like that. For some reason I was never good in science in school. I have a science block though I took high level college math. (had a math minor) but I can't do science so the simple answers work for me.
I don't get all the chemistry of this but it just seems to me that if metals have already done the damage then removing the metals isn't going to un do damage. It will keep further damage from happening, but I think we need to look at what isn't working in the brain and how to fix that.
An ongoing problem of poor digestion and processing of foods and constant offenders, well I can understand that helping. My kids diet won't take away thier autism but it may help with the anxiety and sensory sensitivities. For me that is simple. When I drink too much caffiene or eat too much sugar I know I feel awful, jittery, etc. So I imagine that is how they feel.
Renee
Christie,
The only small study
visit my blog at www.onesickmother.com
Renee.....I too feel that the damage has already been done, we can not reverse it BUT we can try to find ways to prevent further damage......is that why Mike's doctor is recommending oral chelation? I hope you don't mind the questions.....this whole topic is totally overwhelming but fasinating for me. I like what you said about taking control of the things that we can control - like their diets to help with anxiety and sensory issues......good point. That reminds me of a question I keep meaning to ask......is there a link between food/drinks containing artificial colors/flavors and hyperactivity? Slightly off topic - but I think I remember hearing or reading that somewhere.....just curious.
Paula.....thanks for the info......not much improvement in the 12 and over crowd.....interesting.
Christie - who is constantly amazed at how much I DON'T know......
I agree about limiting future damage. I don't know why she is recomending chelation other than that is what is done with ASD kids. It is one of the questions I am asking myself and researching. We are past the age of vaccinations. I make sure any current ones have no thermerisol and skip those that are unneccessary. mercury containing fish are limited as are any mercury type foods. I do have to get his one silver filling replaced. I am careful about foods, no chemicals in house, all water is filtered. I just don't think we have as much current exposure to metals. Perhaps I am wrong. I likely will convince DH to test the hair.
As for food dyes, etc. There is some belief of that. It is part of the feingold diet which has been around forever. I am not sure myself. Haven't tested it but since I am staying away from all chemicals we don't get much food dyes here at all. They have had some in school (they love to get the chocolate milk there when Mom isn't around to say no) but I haven't noticed a huge difference with just that one on a consistent basis.
Renee