Re: Chelation therapy - where is the evidence?

[Guest guest]

Noah,

I think that each child who is recovering, mine included, with

chelation therapy is all the evidence we need. Although if you want

a doctor telling you this, you can go to then new

http://www.autismmedia.org/media1.html and click on metal detox and

Dr Buttar to watch his explanation. His study of 31 kids cured 19

of them and the rest have improved dramatically. IF there were no

connection, there is no way that would happen. THe test results

that I get telling me how many metals are coming out of my child

helps me to understand how true this is. My best to you.

Tami Wilken

and> Chelation therapy - where is the evidence?

>

>

> > There have been a number of posts about chelation therapy

recently. I am

> > wondering what people's experiences have been with this.

> >

> > What I have heard and found:

> > 1) There is not a single controlled study out there.

> > 2) Amy Holmes' " preliminary data " is vague, uncontrolled, and

lacking

> > data on toxicity/complications.

> > 3) I have heard personal reports of renal failure secondary to

chelation

> > therapy, among other complications.

> >

> > I am always curious as to why the results of experimental

therapies like

> > this are never written up. In the herbal supplement markets, the

risk of

> > having a study show that your product does nothing far exceeds

the

> > potential advantage of proving that it does, from a sales

standpoint.

> > Chelation therapy may be effective, but it may not be, and it

may make

> > children sicker. I would only contend that, right now, none of

us know

> > for sure.

> >

> > I completely understand that parents of autistic children, as

many of

> > you on this list are, are adamant about securing the best care

for your

> > children as quickly as possible. The potential benefit for your

children

> > may far exceed the potential danger of chelation therapy. But I

really

> > am curious as to what guides your decision as to what treatment

to seek,

> > and where. I am curious to know who and what sources you trust.

> >

> > All the best,

> > Noah

> >

> > Noah M. Raizman

> > Doris Duke Clinical Research Fellow

> > Trauma Training Center // Dept. of Orthopedic Surgery

> > Columbia University, College of Physicians and Surgeons

> > New York, NY // nmr2002@c... // 212.305.4512

> >>

> >

> >

> >

> >

> >

> >

[Guest guest]

Dear Lynn,

Your story is fascinating. Curious as to whether you were able to

certify that your son received thimerosal-containing vaccines at 15

mo, and whether there had been any signs earlier, when the mcg/kg

doses were higher. Also curious as to whether your son had an

allergic reaction after DTP?

As to " answering your questions, " maybe each of your points would

only raise minor suspicions or a few eyebrows in a pediatrician who

sees all variations of children from healthy to deathly ill and has

to spend most of his or her day telling concerned parents that their

children are not as sick as they think. It must sound defensive -

when you ask, " how could pediatricians have ignored all these

signs?! " I answer, " well, it's easy, it happens all the time, and

it's only abundantly clear in retrospect. " It's not a great situation.

But your question: why put your faith in the safety of medicine? I

can't answer that for you. The medicine machine moves slowly and

makes a lot of mistakes. Individual practitioners move quickly and

make a lot of mistakes. Our need for evidence is part of the reason

that our system moves so slowly, but it also keeps us from blatantly

experimenting on you and your children based on half-baked premises.

Several people have written all about pockets of evidence about

successful chelation. Even a retrospective cohort study, or a case

series with historical controls, would lend the therapy a lot of

creedence. I'm sure these doctors doing chelation have documentation

of their cases and their outcomes. Careful review would be needed, as

would age/developmentally matched cohorts who did not receive

chelation, and reliable and accepted outcome measures, but the study

can't be that hard to do, really. And, unlike what Mark Blaxill has

said, these studies don't require money, or at least not much. I'd be

more than happy to chat more about this, but your pediatrcians are

not going to support chelation therapy until there are clinical data

to suggest its effectiveness...

All the best,

Noah

[Guest guest]

you go girl

Re: Chelation therapy - where is the evidence?

Dear Noah:

I will be happy to answer your question and would appreciate it if you would answer one that I have. You seem to imply that chelation therapy is risky because there have been no studies done on it and why would a parent risk their child to this? Let me just say that I consider myself to be quite a risk averse person in general...I brush and floss, always drive the speed limit, never smoked or tried drugs and was born in "that" generation...you get it. I thought that I had taken steps to ensure that my child be born healthy. I had a Stanford OB and pediatrician, I did not drink a drop during my pregnancy, ate organic whole foods, took my folate, ect. I wanted as drug free a labor as possible, so I delivered my son au natural...no epidural. My son was 9lbs, 8oz 9/9 apgar. I had researched circumcising him for months before we decided it was medically unnecessary and opted out of that. In short, I am a strong believer in nature creating a perfect human being and limiting intervention. I breast fed and made all of his baby food.

My son was fully vaccinated until 17 months, starting at birth with HEP B. Every shot that could have had thimerasol had it. He had "colic" for 7 months. He walked at 10, spoke at 12, and met all of his milestones early. He was the kid at the park who could hang on the monkey bars at 14 mos. After the big 9 at almost 15 mos, he started to go downhill. Three pediatricians later, with the last one laughing me out of his office and telling my husband that I was "stressed and needed a night out" after I telling him that I suspected my son was autistic, I made an appointment with a pediatric neurologist. At this time, my son had 5 out of 6 of the early warning signs of autism which I pulled off the Internet. He was diagnosed a few months later at 28 mos.

We had already been to a DAN conference the month before and had him on GFCF. He was already starting to improve. Fortunately, I read Andy Culter's book and started him on glucosamine sulfate right away. Three months later, Amy Holmes' office confirmed that his blood levels of sulfur were nonexistent. I read everything about mercury and detoxifying that I could get my hands on... up most nights until 3 or 4. Dr. Cave (Dr. Holmes was no longer practicing) recommended DMSA, but I was not comfortable with a drug chelator yet and so continued researching. Pfeiffer came next, since they were using MT promoter and we knew my son's copper levels were very high, but they were compounding with stuff I would not give my son before he became sick. By this time we had spent about $30,000 between all the testing the neurologist wanted and her $350 per hour rate and the trips to Dr. Holmes and Pfeiffer, but still did not feel comfortable with a treatment plan other than some supps from DAN and Andy Cutler's book. But my son was slowly starting to improve on minerals and sulfur and a very strict organic, whole foods diet. Six months into it he said his first new word. He had stopped adding words at around 15 months and he was now 31 months old. All of my research led me to realize that mercury interrupts fatty acid metabolism and so I found Pat Kane. We went to a local naturopath who was using her protocol and decided to go ahead with the testing. Like all the other tests, this one showed abnormalities. He had acidosis, high nitrogen, low oxygen, dumping calcium into his blood, unbalanced fatty acids, rising bun/creatine, low red, high white, ect. We started to correct these with carbonates, butyrate and fatty acids. He started to take off. He woke up...gone were the glazed over eyes, the stimming, the "deafness," the meltdowns, the hypotonia, the night sweats, the color came back into his face, he was happy. This was slow and steady and took about a year. He lost his diagnosis, but he was not all better yet. But for the first time, I felt that we were definitely on the right track and those who knew him could not believe he was the same kid.

Pat Kane is a big believer in opening pathways before detoxing and chlorella was the last supplement to be added to my son's protocol, but I stalled.....how could I be sure that what we pulled he could get out and not get redistributed? I researched some more and consulted with another naturopath whom had been a dentist and gotten mercury poisoning and now worked with chelating exclusively for the past 15 years. He suggested NDF+ for detoxing kids and after researching it, we decided to go ahead. He has been on this for 7 months and although he has had a bit of behavioral regression, this is what made him very NT and is allowing him to go to kindergarten this fall probably slightly ahead of his peers, especially the boys. Although we did not use a chemical to chelate, I am a strong believer in chelating after you open up pathways. If the protocol we chose had not worked, we would have tried something stronger. I would not have waited for the medical profession to catch up and do double blind studies. It is totally irresponsible of them to have not conducted studies on toxicity in kids by now, knowing what we know about all that these kids are exposed to and what it does to them. Look how long it took for them to wake up to lead and they still don't understand if they remove it the child will improve.

Okay, I've answered your question about my experience with chelators and so here is mine

How can you expect me to put my faith in the "safety" of mainstream medicine when the following occurred while under your care?

1. My son was born in April of 2000, AFTER the American Board of Pediatrics recommended using thimerasol free vaccines and sliding HEP B to 6 months but still he was vaccinated at birth, 2, 4 and 6 months without my being told of the choices.

2. My son was vaccinated with DTAP when his chart clearly states that he had a severe milk allergy which also runs on both sides of the family. The insert clearly states that allergies are a contraindication to this vaccine and three different pediatricians gave it to him.

3. His pediatrician ignored his gastrointestinal distress (colic) and told me he would grow out of it and not to be concerned. He cried continuously for 7 months. We switched pediatricians at 5 months.

4. This same pediatrician (Stanford grad) told us when we balked at giving a vaccine because my son was sick, "If I did not vaccinate kids who had sniffles and fevers, none would end up vaccinated."

5. All three gave my son mega doses of Tylenol before injecting them. We now know that Tylenol wipes out sulfur/glutathione which is the only defense these kids have against the metals and chemicals in the shot.

6. He was given several vaccines at birth and 2 months before the liver makes bile which helps them to clear toxins. My son also had a case of jaundice that was again downplayed and dismissed as nothing to concern ourselves with. We now know otherwise.

7. Last, but not least, our concerns regarding our son's declining health were ignored and at times actually made fun of. How can any doctor ignore such obvious signs as these

complete behavior change (told he was going through terrible twos a bit early at 15 months)

loose, smelly, orange stools (it's toddler diarrhea)

went from 100% on growth charts (9lbs. 8oz 23in. birth) to 5%, did not grow at all for a year

stopped adding words (he's a boy and we don't worry about them until they are four)

developed a strabismus at 22 months (we'll just watch that)

left leg started to turn in and the boy who could hang on the monkey bars at 14 months could no longer do it at 22 months

started to fall and trip and had tremors

I am sorry Noah, but I pray everyday that me son is not in an accident and has to be taken to the hospital. I swear if he needed stitches, I would take him to a vet. At least they removed the thimerasol from animal vaccines in the 90's.

Most sincerely,

Lynn

[Guest guest]

Noah,

Please define " not much. " These studies, if done properly and in the

time frame required to do them safely (many parents use a 3 days on

11 days off schedule and chelate for months if not years) take a

great deal of time and so would not be inexpensive in terms of time

and effort. So given that the entire potential need for chelation was

defined in 2000, we have not really had much time to do a proper

controlled study. But the absenec of such work is a major problem,

espeically when there is a great discussion about different

approaches to chelation. We desperately need more and better science,

but recruitng scientists, funding good projects, completing the work

and publishing the results is a large job and you should not

underestimate it. We are trying to sponsor a wide range of science at

Safe Minds and we are maasively underpowered to get the work done.

Also, FWIW, there is at least one chelation study by Bradstreet that

measure mercury excretion in autistics and controls over a short time

frame. It showed a clear elevation in Hg excretion in the autistc

group. But this did not attempt to measure the success of the

treatment.

Mark Blaxill

> Dear Lynn,

>

> Your story is fascinating. Curious as to whether you were able to

> certify that your son received thimerosal-containing vaccines at 15

> mo, and whether there had been any signs earlier, when the mcg/kg

> doses were higher. Also curious as to whether your son had an

> allergic reaction after DTP?

>

> As to " answering your questions, " maybe each of your points would

> only raise minor suspicions or a few eyebrows in a pediatrician who

> sees all variations of children from healthy to deathly ill and has

> to spend most of his or her day telling concerned parents that

their

> children are not as sick as they think. It must sound defensive -

> when you ask, " how could pediatricians have ignored all these

> signs?! " I answer, " well, it's easy, it happens all the time, and

> it's only abundantly clear in retrospect. " It's not a great

situation.

>

> But your question: why put your faith in the safety of medicine? I

> can't answer that for you. The medicine machine moves slowly and

> makes a lot of mistakes. Individual practitioners move quickly and

> make a lot of mistakes. Our need for evidence is part of the reason

> that our system moves so slowly, but it also keeps us from

blatantly

> experimenting on you and your children based on half-baked

premises.

>

> Several people have written all about pockets of evidence about

> successful chelation. Even a retrospective cohort study, or a case

> series with historical controls, would lend the therapy a lot of

> creedence. I'm sure these doctors doing chelation have

documentation

> of their cases and their outcomes. Careful review would be needed,

as

> would age/developmentally matched cohorts who did not receive

> chelation, and reliable and accepted outcome measures, but the

study

> can't be that hard to do, really. And, unlike what Mark Blaxill has

> said, these studies don't require money, or at least not much. I'd

be

> more than happy to chat more about this, but your pediatrcians are

> not going to support chelation therapy until there are clinical

data

> to suggest its effectiveness...

>

> All the best,

> Noah

[Guest guest]

Dear Mark,

I am familiar with the Bradstreet article. I am very glad that Safe

Minds is trying to support this research. What I think is necessary

are comparison studies of two protocols and a retrospective study

comparing chelated children with non-chelated children. Though a

typical RCT would be difficult because of the inability to

effectively blind and the absence of a placebo group, randomization

is easy and the treatment protocols would be easy to administer by

those practitioners already doing the therapy. What would be

difficult would be controlling for other interventions children use

and coordinating this in a multi-center fashion. This requires part

time work on the part of a single coordinator. I have initiated and

worked on several similar studies in this research year alone,

working part time. I know capable undergraduates who could put it all

together in summer research project.

The retrospective is a little harder, but somehow there needs to be

some sort of data that's not anecdotal suggesting that chelation is

better than no chelation. If, of course, it is...

BTW - this is hard work that requires dedicated and knowledgable

people, but I think that it behooves the community of autistic

parents to see that this research is done. Would be happy to talk

research structure offlist.

N.

> Noah,

> Please define " not much. " These studies, if done properly and in

the

> time frame required to do them safely (many parents use a 3 days on

> 11 days off schedule and chelate for months if not years) take a

> great deal of time and so would not be inexpensive in terms of time

> and effort. So given that the entire potential need for chelation

was

> defined in 2000, we have not really had much time to do a proper

> controlled study. But the absenec of such work is a major problem,

> espeically when there is a great discussion about different

> approaches to chelation. We desperately need more and better

science,

> but recruitng scientists, funding good projects, completing the

work

> and publishing the results is a large job and you should not

> underestimate it. We are trying to sponsor a wide range of science

at

> Safe Minds and we are maasively underpowered to get the work done.

>

> Also, FWIW, there is at least one chelation study by Bradstreet

that

> measure mercury excretion in autistics and controls over a short

time

> frame. It showed a clear elevation in Hg excretion in the autistc

> group. But this did not attempt to measure the success of the

> treatment.

> Mark Blaxill

>

[Guest guest]

we live in land actually about an hr and 1/2 from DC my younger son didn’t get vaccines till he was 4 1/2 so we are lucky he is not affected by autism

Re: Chelation therapy - where is the evidence?

April 3....are you from the bay area

[Guest guest]

Noah wrote:

but your pediatrcians are

> not going to support chelation therapy until there are clinical data

> to suggest its effectiveness...

Noah, I'm afraid to say that even if a DBPControlled study is

conducted to show that chelation is effective at reducing ASD

symptoms, MOST pedi's still are NOT going to buy into it, simply

because they will claim " how can you not completely rule out the

benefit of other treatments that were also helping (because no parent

is going to stop sending their child to school, etc.) " and also, it

goes back to that inherent self-preservation argument of, if chelation

does help, then that does imply that mercury/heavy metals were a

problem for this child, and if so, then *I* as pediatrician, must have

harmed a generation of kids with those shots... so I really think that

even in the face of studies, MOST pedi's are still not going to buy

into it, unfortunately.

Somewhere about a year or so ago, there was a good study done on GFCF

diet to show that it did help ASD kids, but you know, pedi's

and " experts " still do not acknowledge that it helps. They liken it

to " we all have food sensitivities, and we'd all perform better if we

were feeling 100% at our game, I can't eat dairy after 4 p.m. or I'm

up all night, etc. " Even in the face of studies, they still do not

want to diagnose these kids with their very real medical conditions

like reflux, colitis, etc. for which medications and/or dietary

changes can be helpful. You're getting quite an eyefull from the

parents who have become disenchanted with how medicine treats autistic

children. I've read from other parents who had high functioning

kiddo's who took their kids to see leading GI docs in the country, for

example, one who did not tell the doc that their kid was ASD.

Sometime during the interview the doc 'realized' that this was the

case and asked the mom, who admitted. She said that right then and

there, instead of going further with the concern for her child's GI

symptoms, she got the old lecture of " well you know, GI problems tend

to run in ASD " and she got NO help from this person. No help.

Diarrhea can be pouring out of a kid's pantlegs and leaving acid burns

and a parent will still be told " well these kids have GI problems " .

This generation of kids has not had a voice.

Then on top of it, parents who want to make an alternate vaccination

schedule for the siblings, or skip the rest of the vaccines altogether

are told by their pedi's to go find someone else. That they will no

longer care for their children. I find this offensive, because I have

never heard of a smoker being dropped by their doctor for not

following their orders to stop smoking, or an obese person who did not

follow their physician's dietary recommendations, or a diabetic who

did not stop consuming sugary foods or didn't monitor their blood

regularly... perhaps it happens, but I would venture that it is just a

speck in comparison to the amount of families with ASD kids/siblings

who are being turned away from healthcare for exercising their

parental RIGHT to refuse/alter the vaccination schedule. It is

bullying, and it just goes to show that this population of kids has

gotten the short end of the stick when it comes to having quality

healthcare.

W

[Guest guest]

Noah,

No one in the world wants better research on therapy into autism

treatments more than the parents. I'm not quite sure who

is " behooved " to get this work done, but frankly we are working so

hard to retain the respectability of ANY research in this area that

reaching downstream to treatment studies is one of the hardest things

of all to get done. Practically speaking, we have to establish

credibility for the theory before we can reach for clinical trials.

so your suggestion, although I believe it's correct, puts the cart

before the horse in a funding sense.

But in terms of the research realities, the establishment autism

parent organizations (those with the money) have scientific review

boards with non-parent scientists who don't want to touch the mercury

issue with a ten foot pole, let alone propose studies to treat kids

with chelators that (whisper, whisper) might cause horrible adverse

effects like renal failure. The organizations that are willing to

declare their support for even investigating the mercury hypothesis

don't have the resources to pursue the agenda we all agree makes

sense. And when the IOM comes out and says, " don't do more research

into any vaccine theory " , it doesn't help the scientific process very

much.

But if you'd like to make a contribution towards a chelation trial,

we would certainly welcome it!

Mark

> > Noah,

> > Please define " not much. " These studies, if done properly and in

> the

> > time frame required to do them safely (many parents use a 3 days

on

> > 11 days off schedule and chelate for months if not years) take a

> > great deal of time and so would not be inexpensive in terms of

time

> > and effort. So given that the entire potential need for chelation

> was

> > defined in 2000, we have not really had much time to do a proper

> > controlled study. But the absenec of such work is a major

problem,

> > espeically when there is a great discussion about different

> > approaches to chelation. We desperately need more and better

> science,

> > but recruitng scientists, funding good projects, completing the

> work

> > and publishing the results is a large job and you should not

> > underestimate it. We are trying to sponsor a wide range of

science

> at

> > Safe Minds and we are maasively underpowered to get the work done.

> >

> > Also, FWIW, there is at least one chelation study by Bradstreet

> that

> > measure mercury excretion in autistics and controls over a short

> time

> > frame. It showed a clear elevation in Hg excretion in the autistc

> > group. But this did not attempt to measure the success of the

> > treatment.

> > Mark Blaxill

> >

[Guest guest]

Mark Blaxill says:

>Practically speaking, we have to establish

> credibility for the theory before we can reach for clinical trials.

> so your suggestion, although I believe it's correct, puts the cart

> before the horse in a funding sense.

Mark,

As you may well know, there are plenty of FDA approved drugs on the

market that have " passed " clinical trials that have no established

theory of causation underlying their efficacy or safety. Neither

Pharma, nor the FDA seem to need a horse at all to start pushing their

carts onto the public. This causation horse is more a red herring for

strategic stalling, IMO. " We must remain paralyzed until sufficient

proof of harm falls from the skies (as it will be awhile before we

fund our own demise.) "

Public health is both a matter of politics and health, by definition.

In the public venue, scientific proof of causation is not necessary to

establish fault, make laws, imprision and execute criminals, as its

standards are far too high for very much outside the laboratories,

except in very specific and established applications like DNA testing.

There is ample " smoking gun " evidence, evidence of harm, if you will,

for clinical trials to have begun yesterday. The failure of public

health agencies to have done so by now is tantamount to criminal

negligence, if I may permitted to rant a bit. To qoute Bob Dylan, " you

don't need a weatherman to know which way the wind blows. "

Lenny

[Guest guest]

fair point, Lenny, but I was hedging my comment by describing

practical reality, not necessarily advocating a sequence. Believe me,

I strongly support doing rigorous work on autism therapies of all

kinds.

>

> Mark Blaxill says:

> >Practically speaking, we have to establish

> > credibility for the theory before we can reach for clinical

trials.

> > so your suggestion, although I believe it's correct, puts the

cart

> > before the horse in a funding sense.

>

> Mark,

> As you may well know, there are plenty of FDA approved drugs on the

> market that have " passed " clinical trials that have no established

> theory of causation underlying their efficacy or safety. Neither

> Pharma, nor the FDA seem to need a horse at all to start pushing

their

> carts onto the public. This causation horse is more a red herring

for

> strategic stalling, IMO. " We must remain paralyzed until sufficient

> proof of harm falls from the skies (as it will be awhile before we

> fund our own demise.) "

>

> Public health is both a matter of politics and health, by

definition.

> In the public venue, scientific proof of causation is not necessary

to

> establish fault, make laws, imprision and execute criminals, as its

> standards are far too high for very much outside the laboratories,

> except in very specific and established applications like DNA

testing.

> There is ample " smoking gun " evidence, evidence of harm, if you

will,

> for clinical trials to have begun yesterday. The failure of public

> health agencies to have done so by now is tantamount to criminal

> negligence, if I may permitted to rant a bit. To qoute Bob

Dylan, " you

> don't need a weatherman to know which way the wind blows. "

>

> Lenny

[Guest guest]

What about retrospective studies comparing incidence of, asthma , allergies,

diabetes ,exzema etc in vaccinated vs unvaccinated children.?

Could you point me to those please????

Re: Chelation therapy - where is the evidence?

>

> Dear Mark,

>

> I am familiar with the Bradstreet article. I am very glad that Safe

> Minds is trying to support this research. What I think is necessary

> are comparison studies of two protocols and a retrospective study

> comparing chelated children with non-chelated children. Though a

> typical RCT would be difficult because of the inability to

> effectively blind and the absence of a placebo group, randomization

> is easy and the treatment protocols would be easy to administer by

> those practitioners already doing the therapy. What would be

> difficult would be controlling for other interventions children use

> and coordinating this in a multi-center fashion. This requires part

> time work on the part of a single coordinator. I have initiated and

> worked on several similar studies in this research year alone,

> working part time. I know capable undergraduates who could put it all

> together in summer research project.

>

> The retrospective is a little harder, but somehow there needs to be

> some sort of data that's not anecdotal suggesting that chelation is

> better than no chelation. If, of course, it is...

>

> BTW - this is hard work that requires dedicated and knowledgable

> people, but I think that it behooves the community of autistic

> parents to see that this research is done. Would be happy to talk

> research structure offlist.

>

> N.

>

>

>

> > Noah,

> > Please define " not much. " These studies, if done properly and in

> the

> > time frame required to do them safely (many parents use a 3 days on

> > 11 days off schedule and chelate for months if not years) take a

> > great deal of time and so would not be inexpensive in terms of time

> > and effort. So given that the entire potential need for chelation

> was

> > defined in 2000, we have not really had much time to do a proper

> > controlled study. But the absenec of such work is a major problem,

> > espeically when there is a great discussion about different

> > approaches to chelation. We desperately need more and better

> science,

> > but recruitng scientists, funding good projects, completing the

> work

> > and publishing the results is a large job and you should not

> > underestimate it. We are trying to sponsor a wide range of science

> at

> > Safe Minds and we are maasively underpowered to get the work done.

> >

> > Also, FWIW, there is at least one chelation study by Bradstreet

> that

> > measure mercury excretion in autistics and controls over a short

> time

> > frame. It showed a clear elevation in Hg excretion in the autistc

> > group. But this did not attempt to measure the success of the

> > treatment.

> > Mark Blaxill

> >

>

>

>

>

>

>

>

>

>

[Guest guest]

I agree. Our ped practice has turned away 4 of our friends on the phone

telling them, " You need to find another pediatrician. " Their crime? They

asked for the policy on vaccinations. Not EXTENDING the vaccination

schedule, or their policy on SKIPPING some vaccinations. They merely asked

what the policy WAS. Very disheartening.

Another more enlightened Doc there told us they wouldn't consider the DAN

protocol until insurance covered it. OK< just say NEVER.

Who is working on getting the insurance industry to shoulder their share?

Amber M

> wrote:

> You're getting quite an eyefull from the

> parents who have become disenchanted with how medicine treats autistic

> children. I've read from other parents who had high functioning

> kiddo's who took their kids to see leading GI docs in the country, for

> example, one who did not tell the doc that their kid was ASD.

> Sometime during the interview the doc 'realized' that this was the

> case and asked the mom, who admitted. She said that right then and

> there, instead of going further with the concern for her child's GI

> symptoms, she got the old lecture of " well you know, GI problems tend

> to run in ASD " and she got NO help from this person. No help.

> Diarrhea can be pouring out of a kid's pantlegs and leaving acid burns

> and a parent will still be told " well these kids have GI problems " .

> This generation of kids has not had a voice.

>

[Guest guest]

Hello Amber M.:

Once we get rolling A.R.M. intends to make insurance coverage for

biomedical interventions in " autism " an issue. Let's see which

legislators help us on this one.

Bob Krakow

On Apr 29, 2005, at 11:41 PM, amber mintz wrote:

> I agree. Our ped practice has turned away  4 of our friends on the

> phone

> telling them, " You need to find another pediatrician. " Their crime? 

> They

> asked for the policy on vaccinations.  Not EXTENDING the vaccination

> schedule, or their policy on SKIPPING some vaccinations. They merely

> asked

> what the policy WAS.  Very disheartening.

>

> Another more enlightened Doc there told us they wouldn't consider the

> DAN

> protocol until insurance covered it. OK< just say NEVER.

>

> Who is working on getting the insurance industry to shoulder their

> share?

>

> Amber M

>

>

> > wrote:

> >   You're getting quite an eyefull from the

> > parents who have become disenchanted with how medicine treats

> autistic

> > children.  I've read from other parents who had high functioning

> > kiddo's who took their kids to see leading GI docs in the country,

> for

> > example, one who did not tell the doc that their kid was ASD.

> > Sometime during the interview the doc 'realized' that this was the

> > case and asked the mom, who admitted.  She said that right then and

> > there, instead of going further with the concern for her child's GI

> > symptoms, she got the old lecture of " well you know, GI problems

> tend

> > to run in ASD " and she got NO help from this person.  No help.

> > Diarrhea can be pouring out of a kid's pantlegs and leaving acid

> burns

> > and a parent will still be told " well these kids have GI problems " .

> > This generation of kids has not had a voice.

> >

>

>

>

>

>

[Guest guest]

Hi Angie,

May I recommend this book to you?

Children with Starving Brains, by Dr. Jaqueline McCandless:

http://www.autism-rxguidebook.net/DesktopDefault.aspx

It might be useful to get an idea of what is available to you in the way of

Biomedical intervention.

All the best,

Avril

At 02:14 PM 4/29/2005, you wrote:

>the nearest Dans doc to me is is a 5 hr drive and he dose the

>MB12 shots of which I have seriously been concidering trying but I havnt

>been able to talk his dad into it yet

> Re: Chelation therapy - where is the evidence?

>

>Hi Angie,

>

>Have you tried the DAN protocol? I attribute my son's recovery to bio

>intervention.

>

>Good luck and best wishes,

>

>Avril

>

>

>

>----------

>

[Guest guest]

Go to Dr. Amy Holmes and Dr. Cave. They were some of the first

docs out there and they have records on hundreds and hundreds of kids!

Barb

Re: Chelation therapy - where is the evidence?

> Dear Lynn,

>

> Your story is fascinating. Curious as to whether you were able to

> certify that your son received thimerosal-containing vaccines at 15

> mo, and whether there had been any signs earlier, when the mcg/kg

> doses were higher. Also curious as to whether your son had an

> allergic reaction after DTP?

>

> As to " answering your questions, " maybe each of your points would

> only raise minor suspicions or a few eyebrows in a pediatrician who

> sees all variations of children from healthy to deathly ill and has

> to spend most of his or her day telling concerned parents that their

> children are not as sick as they think. It must sound defensive -

> when you ask, " how could pediatricians have ignored all these

> signs?! " I answer, " well, it's easy, it happens all the time, and

> it's only abundantly clear in retrospect. " It's not a great situation.

>

> But your question: why put your faith in the safety of medicine? I

> can't answer that for you. The medicine machine moves slowly and

> makes a lot of mistakes. Individual practitioners move quickly and

> make a lot of mistakes. Our need for evidence is part of the reason

> that our system moves so slowly, but it also keeps us from blatantly

> experimenting on you and your children based on half-baked premises.

>

> Several people have written all about pockets of evidence about

> successful chelation. Even a retrospective cohort study, or a case

> series with historical controls, would lend the therapy a lot of

> creedence. I'm sure these doctors doing chelation have documentation

> of their cases and their outcomes. Careful review would be needed, as

> would age/developmentally matched cohorts who did not receive

> chelation, and reliable and accepted outcome measures, but the study

> can't be that hard to do, really. And, unlike what Mark Blaxill has

> said, these studies don't require money, or at least not much. I'd be

> more than happy to chat more about this, but your pediatrcians are

> not going to support chelation therapy until there are clinical data

> to suggest its effectiveness...

>

> All the best,

> Noah

>

>

>

>

>

>

>

>

>

[Guest guest]

Noah,

As for what guided my decision, my son was getting worse 2 1/2 years

ago, & every doctor told me " not to worry " . When I ran across a

description of some of his symptoms, I began researching. I read

everything I could get my hands on. I ran across the autism treatment

group & began reading about chelation. I bought Andy Cutler's book &

read about his protocol & the scientific/biochemical reasons that it

is safe & effective. Then I started chelating my son. It hasn't all

been easy, but after 2 years he is doing fantastic! Pretty close

to " normal " .

I figured if almost 4,000 people belonged to this group, & everyone

was pretty much having the same degree of success, it was worth a

try. I have not had a doctor's guidance, since I can't find one in

my area who is willing to listen to me about what is going on in my

son's body. Once I mention mercury poisoning from vaccines, they no

longer want to listen.

There definitely should be controlled studies on chelation. But, to

do that, someone in the mainstream medical establishment would have

to admit that there was some truth to the thimerosal-autism theory.

To have the study published in the " right " journal to gain

acceptance would be risky, if not impossible at this point, I'm

guessing. As a parent, being told to " wait & see " is not good

enough, especially when you no longer trust doctors. It is amazing

the progress that these children can make when they are given the

right supplementation & treatment. It's just too bad that no one

believes us!

e

> There have been a number of posts about chelation therapy

recently. I am

> wondering what people's experiences have been with this.

>

> What I have heard and found:

> 1) There is not a single controlled study out there.

> 2) Amy Holmes' " preliminary data " is vague, uncontrolled, and

lacking

> data on toxicity/complications.

> 3) I have heard personal reports of renal failure secondary to

chelation

> therapy, among other complications.

>

> I am always curious as to why the results of experimental

therapies like

> this are never written up. In the herbal supplement markets, the

risk of

> having a study show that your product does nothing far exceeds the

> potential advantage of proving that it does, from a sales

standpoint.

> Chelation therapy may be effective, but it may not be, and it may

make

> children sicker. I would only contend that, right now, none of us

know

> for sure.

>

> I completely understand that parents of autistic children, as many

of

> you on this list are, are adamant about securing the best care for

your

> children as quickly as possible. The potential benefit for your

children

> may far exceed the potential danger of chelation therapy. But I

really

> am curious as to what guides your decision as to what treatment to

seek,

> and where. I am curious to know who and what sources you trust.

>

> All the best,

> Noah

>

> Noah M. Raizman

> Doris Duke Clinical Research Fellow

> Trauma Training Center // Dept. of Orthopedic Surgery

> Columbia University, College of Physicians and Surgeons

> New York, NY // nmr2002@c... // 212.305.4512

> >