Has Chelation worked for your child?

Discuss autism diets and biomedical treatments of autism.

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Has Chelation worked for your child?

Yes, total cure for autism
0
No votes
Yes, a major improvement
4
33%
Yes, minor improvement
2
17%
No, no change
5
42%
No, and regression occurred
1
8%
 
Total votes: 12

Winnie
Posts: 4227
Joined: Sat Mar 18, 2006 2:48 pm

Re: Has Chelation worked for your child?

Postby Winnie » Thu Jun 11, 2015 5:38 pm

Pirsig wrote:I do not understand this at all. After 2 years of various biomed interventions, this has been one of the best interventions I have tried so far (alongwith MB12 and HBOT). So, we have an intervention that is very inexpensive and works very well (according to ARI treatment surveys) but most DAN's do not use AC protocol.

The ARI treatment survey was stopped over 6 years ago. It wasn’t very meaningful anyway – just a counting up of parental votes with vague parameters among a largely treatment-biased group of respondents from the years 1967 – 2009. Once the WWW came about, it pretty much served as a reflection of popular treatments over the years (these have waxed and waned). It is not segregated, for instance, into year or type of “detox-chelation” – not Cutler’s protocol, DAN protocol, transdermal DMPS (Buttar), OSR (Boyd Haley), autism clay, saunas, foot baths, cilantro, or anything else.

Pirsig wrote:Not sure if they think its very inconvenient, or if they do not know about this, or political reasons, or safety concerns?? It would be good to have an answer.
You can read the position papers – section entitled Alpha-lipoic acid:
2001: http://www.autismangelspurse.com/MERCUR ... ATION.html
2005: http://autism.asu.edu/TreatmentOptions.pdf

I think Bernard Rimland had the best of intentions when establishing the Autism Research Institute – he made a historic contribution to autism debunking the thinking perpetuated by Bettelheim (refrigerator mothers). The ARI later appeared to dissolve into a promotional venue for DAN, focusing attention/treatment interest on causation beliefs. A DAN doctor isn’t/wasn’t necessarily anything special, all one needed to do to be a DAN doc is claim to be one (to be listed on the ARI recommended physician page, all one needed to do was attend one workshop each year). To be called the ”Autism Research Institute,” they were/are notably short on conducting research, as well as acknowledging research which does not support their treatment beliefs.

The thinking of the alternative community (DAN) around the time the chelation/metal detox papers were assembled was centered around mercury causation (mostly via vaccines). Less-than-credible practitioners sold the notion that autism is mercury poisoning to parents, along with treatments to reverse it, and this was spread all over and popularized by less-than-credible orgs like Generation Rescue and Age of Autism. See news interview of JB Handley (of Generation Rescue and Age of Autism) in 2005 (just didn’t pan out at all like he proclaimed):
https://www.youtube.com/watch?v=e7Hhgaf3Co0&index=4&list=PL96E4D11DD0D99DA9

Cutler's chelation recovery claims mirror these^ silly claims (chelate and the child will be completely "NT"/normal within 2 years ), except that Cutler's plan takes years (and years) longer -- because, he claims, it is safe. JB Handley (and the practitioners he promoted) had nothing to support his bombastic claims, and neither does Cutler.

Pirsig wrote:Here is an old conversation from yahoo groups between Amy Holmes and Andy Cutler. Very informative. Its really interesting to read her thoughts on mainstream, regular pediatricians and how most of them do not care about kids on the spectrum. This has been my experience as well and if you read yahoo groups, thousands of parents with kids on the spectrum face the same ignorance and apathy in their pediatrician's office.

Ironically, perhaps the most ignorant and least respectful comment I have ever heard/seen a physician utter was from Amy Holmes herself – in reference to her own teen-aged son – in the article previously linked:

"We didn't even think the kid had a brain," says Holmes, a retired medical doctor.

Even more ironic, she said it years after she proclaimed the amazing results from her chelation protocol when he was six.
Winnie
"Make it a powerful memory, the happiest you can remember."

Pirsig
Posts: 83
Joined: Tue Mar 31, 2015 10:47 pm

Re: Has Chelation worked for your child?

Postby Pirsig » Fri Jun 12, 2015 10:23 am

Mouse wrote:I've read that mercury may not show up on a urine or blood test unless provoked as it remains in the tissue, and autistics have a tougher time excreting metal from their system. What is the opinion of parents on this forum?


I am just another parent and nowhere close to being an expert on this topic. So, I will just post some of Andy Cutler's thoughts on this here.

http://onibasu.com/archives/am/1000.html

What is the exact test to determine if mercury is an issue for your child?

The ones that are legitimate indicators of toxicity are things like the fractionated urine porphyrin test or hair element analysis where you look for the characteristic pattern in the essential elements.

Challenge tests are not diagnostic and do have risks.

Blood and urine mercury are often normal or even low in people who are poisoned - the amount of mercury in their brain is what is important and thankfully nobody is going to take a sample of that.

Andy Cutler

FatherOf2
Posts: 1667
Joined: Mon Mar 11, 2013 1:37 am

Re: Has Chelation worked for your child?

Postby FatherOf2 » Fri Jun 12, 2015 10:57 pm

Chelation causes children to grow, especially if done over several years :D

Winnie
Posts: 4227
Joined: Sat Mar 18, 2006 2:48 pm

Re: Has Chelation worked for your child?

Postby Winnie » Sat Jun 13, 2015 12:54 am

FatherOf2 wrote:Chelation causes children to grow, especially if done over several years :D


Apparently it causes health-conscious chemists to grow, too. :P


Image
Winnie
"Make it a powerful memory, the happiest you can remember."

Santosg
Posts: 196
Joined: Sun Aug 17, 2014 5:33 am

Re: Has Chelation worked for your child?

Postby Santosg » Sun Jun 14, 2015 9:36 am

At some point debating the issue becomes pointless. There are children who require chelation and there are children with autism that have benefited from chelation. Unless every testimonial should be dismissed including my own :shock: You'll find a lot of scare tactics being used to dissuade parents from even considering chelation. If tests indicate the need to chelate, I think it is an important intervention. AC chelation is a safe protocol and worth doing to see if any positive effects are demonstrated. It has been the most beneficial thing I've done for my son and I've seen immediate improvements, not ones that took years to materialize. If I track his progress since we started to chelate over the last few months he's made very significant improvement. These improvements have not been gradual. Since introducing ALA his eye contact has increased 60 percent as well as greater social engagement. I am very glad that I tried chelation with my child. I don't want parents to dismiss it out of hand. Run tests, consider your options, make the best choices that you can for your children. Not everyone needs chelation. Some do. For those who do, I think chelation should and can help them.

Mouse
Posts: 63
Joined: Mon Jun 08, 2015 10:46 pm

Re: Has Chelation worked for your child?

Postby Mouse » Sun Jun 14, 2015 10:16 am

You'll find a lot of scare tactics being used to dissuade parents from even considering chelation. If tests indicate the need to chelate, I think it is an important intervention.


I feel like the media and government is really on a witch hunt. I've tried some ALA on myself, and frankly although I'm still the same person I feel like some of my aspie-like qualities have lessoned.

I was trying to get a real life tally from parents on if chelation worked for them. So far it's 50/50.
How exactly do tests indicate the need? Our results warned us some metals are also in tissue (as in not detectable in urine or blood). We are in the yellow zone for 3 heavy metals (cadmium, tin, and tungsten), lead is high in the green. Mercury is undetectable in his urine, is that because he can't naturally chelate it or does he really have none?

alexsdad
Posts: 134
Joined: Fri Dec 30, 2011 1:31 pm

Re: Has Chelation worked for your child?

Postby alexsdad » Sun Jun 14, 2015 12:49 pm

Mouse - A trial of a few rounds of AC chelation probably won't do any harm to your child if you follow the instruction carefully. If there is a negative reaction you can stop. Just don't think you should do at least 50 or 100 rounds to see positives like some people claim. Using a chelation agent as an antioxidant can be another intervention too if done carefully.

Winnie
Posts: 4227
Joined: Sat Mar 18, 2006 2:48 pm

Re: Has Chelation worked for your child?

Postby Winnie » Sun Jun 14, 2015 1:42 pm

Mouse wrote:I was trying to get a real life tally from parents on if chelation worked for them. So far it's 50/50.
How exactly do tests indicate the need? Our results warned us some metals are also in tissue (as in not detectable in urine or blood). We are in the yellow zone for 3 heavy metals (cadmium, tin, and tungsten), lead is high in the green. Mercury is undetectable in his urine, is that because he can't naturally chelate it or does he really have none?


(I didn't vote, just FYI, since my son wasn't chelated)

I feel like the scare tactics come more so from those firmly entrenched in the beliefs surrounding mercury (or metal) toxicity. I don’t feel like Cutler’s protocol, or ALA itself, is very scary. No one (including Cutler) knows how safe or effective it is for use in children, however, especially for long-term use, or if the protocol even does what he claims it does. Cutler’s followers generally just accept his claims.

However, subjecting a child to painful and invasive IV chelation treatments on the basis of a quacky test is something else altogether, IMO.

I wouldn’t be surprised if children with autism are at increased risk exposure to metals – especially given how common mouthing of objects, hands, and PICA are in this population. Certainly parents and physicians should be aware of this possibility (even test for it), and if elevated metals are (legitimately) present, do everything possible to identify and eliminate the source asap in addition to any warranted treatment.

Metals are ubiquitous – everyone has some metals in their tissues. If children with autism are “poor excretors,” then the accumulation of metals/toxins over time, along with the impaired ability to metabolize these toxins, would cause children to deteriorate and would make autism seem a progressive disease (applying the usual detox/metals logic). The vast majority of children with autism are never tested with urinary, stool, hair, counting rules, or polyphirin tests, and never chelated, yet they do not deteriorate – they improve.

Once you pitch your tent in a chelation camp, your fellow campers and camp directors will provide you with reasons to chelate, regardless of test results. There is seemingly not a result where chelation is not recommended – if a test (regardless of the validity) indicates elevated metals – chelate. If the test does not indicate metal toxicity, this is because metals are “hiding,” or because “mercury comes out last,” so chelate. Meet the “counting rules?” Chelate. Don’t meet the “counting rules?” Chelate. If no mercury if found in a challenge test, it’s because you need to do 100 more rounds before mercury “shows up.”

If your child learns a new skill or has a good day, it is attributed to chelation. If your child has a bad day, it may be attributed to “mobilizing metals,” yeast, or the lack of something that you need to add. But it’s not because chelation isn’t “working,” of course.

So when do you stop chelating – are you treating a lab value or core deficits of autism? If you AC chelate 6 years (300 rounds) and your kid isn’t “normal” yet? No worries – campers have an answer. Your child has made improvements over what he was doing 6 years prior. Because of chelation, of course. Continue chelating.

But the campers and camp director will certainly scare you about the consequences of not chelating and leaving mercury (or other metals) in your child’s brain and tissues. Even though they don’t have any idea whatsoever if anything has ever been chelated from your child’s (or anyone else’s) brain.

Lots of parents have reported gains initially when using ALA -- I don’t discount these reports but I feel (like some others here) that this may be related to ALA’s anti-oxidant properties and not metal removal. If you give it a go just be wary of the culture of the camp.
Winnie
"Make it a powerful memory, the happiest you can remember."

Mouse
Posts: 63
Joined: Mon Jun 08, 2015 10:46 pm

Re: Has Chelation worked for your child?

Postby Mouse » Sun Jun 14, 2015 4:36 pm

Before watching trace amounts I thought chelation was a gimmick. The media taught me that chelation is a dangerous fraud.
I watched trace amounts and thought perhaps autism is something that can be cured/recovered from. Trace amounts didn't exactly sell me that chelation is safe and effective, but it did get me reading about it more.
I then came accross generation rescue, which led me to read about MB12, anti fungals, anti virals, chelation, and PANDAs.

Our first pediatrician said all autistic children are retards, and that my kid is not autistic. Later after a bad vaccine reaction and some probiotics my doctor thought maybe my child could be autistic and we should go to a developmental pediatrician. Knowing what our pediatrician thought about autism it should go without saying he was quickly dropped. Our developmental pediatrician quickly moved away from New Orleans leaving us with no help in the city for help. I've asked a different pediatrician to order some tests for metals in urine and some other blood tests and they had no clue what I was even talking about. A couple pediatricians later I've come to the realization that pediatricians just don't care about autism.

Since moving to Charlotte I have help from two medical doctors! I have a neurologist who specializes in children and was a DAN doc, and also a holistic doc who is interested in curing the gut. For the first 6 years of my son't life we've had no help or support other than ABA, and now we have 2 doctors willing to help out. My neuro and holistic doesn't see a need for chelation. But I'll still do everything in my power to research and ask questions to see what's working for other parents. Since I've posted in this forum I've read a sticky post about the top 6 treatments and chelation was mentioned about half of the time, and when it was mentioned it was often the top 2. Unfortunately this forum isn't that active so only 11 voted.

Unfortunately Chelation may not be a good fit for us. My son also has a small amount of yeast.

na7222002
Posts: 22
Joined: Thu Feb 06, 2014 11:43 am

Re: Has Chelation worked for your child?

Postby na7222002 » Mon Jun 15, 2015 5:08 pm

We haven't done chelation yet. In the beginning of our bio med journey, Integrative doctor had us try ALA as an anti oxidant (it was compounded with Vit E ). DS didn't tolerate too well at that time. After that, we've been focusing on restoring methylation. So far, he has been excreting metals pretty good (we test hair every 3-4 months). I wonder if there are other people who was able to get metals out without chelating ....

Pirsig
Posts: 83
Joined: Tue Mar 31, 2015 10:47 pm

Re: Has Chelation worked for your child?

Postby Pirsig » Thu Jun 18, 2015 8:13 pm

Mouse,

Old poll from the autism- mercury subgroup. I know its informal but has a lot more voters than the 11 parents who voted here. Plenty more polls on chelation on that group in case it helps you.

https://groups.yahoo.com/neo/groups/Aut ... ATECREATED

Have you noticed dramatic improvement after chelating a child between 5 and 7 years of age using DMSA/ALA?
mamadd22 77 votes April 23, 2005

Yes, dramatic improvements started after 1rst few rounds 34% (26)
No, only minor improvements 25% (19)
No improvements at all 16% (12)
Yes, but it took more than 6 months 17% (13)
Yes, but it took more than a year 9% (7)

i-jerry
Posts: 169
Joined: Wed Dec 21, 2016 7:46 pm

Re: Has Chelation worked for your child?

Postby i-jerry » Wed Nov 01, 2017 8:09 am

kulkulkan wrote:Needless to say, whether chelating or adding zinc for metallothionein or using antioxidants to increase glutathione, an important thing to do is figure out source of ongoing exposure (say for lead from drinking water) and minimize it as much as possible. There was a long-term controlled DMSA trial in paediatric population with high lead blood levels showing that while DMSA chelation did reduce lead burden over six months (which is to be expected), but once chelation stopped lead levels returned back to normal and there was no long-term cognitive improvements. Of course, this study could also be interpreted as stopped chelation too early as well or didn't address the on-going exposure.

The question in my mind isn't whether to chelate (as I am comfortable with the side effects/downside), but really for how long and does therapeutic (i.e. AC) chelation just replace the monthly ongoing metals burden/exposure, or is it actually reducing oxidative stress in the long-term? I know it has been significantly reduced the copro porphyrins marker for us but would this marker go up if we stopped? Don't know but hopefully not.

If we had blood levels of Hg anywhere close to those reported in below recent study from Egypt (linking to anti-MBP autoantibodies, ASD Hg range was 3-32 mcg/dl whereas control was 1-6 mcg/dl), I would chelating a LOT more aggressively. Another reason to test blood levels, not just urine, hair and porphyrins.

http://autismweb.com/forum/viewtopic.php?f=6&t=33323


I'm also worried once acc stopped and toxic back to body again. We had 1 year supplements on zinc, mag etc, but metallothinonein and gsh haven't go up because my sons body is over burden due to heavy metal toxic. Dr said once dmsa remove the metal from his body and metallothionein should goes up.
But our final aim is improvement his own immune system to fight with bad things


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