July 30, 2005

File under: Things That Call For A CDC Study

The following is an article on Chelation that was brought to my attention by Skeptico and I thought that it was a great article to address as a parent who is currently chelating their child.

Chelation & Autism
Jul 27, 10:41 AM
by James R. Laidler, M.D.

Can chelation help autism?

Chelation is a legitimate medical therapy for disorders caused by an excess of certain metals. Copper, iron, mercury, arsenic and lead are all metals that can cause toxicity disorders that are successfully treated by chelation. Since about 1985, when the idea that autism might be caused by mercury poisoning first arose, many practitioners and groups have promoted chelation as a treatment for autism.

Clearly, the first question that must be settled is whether autism is caused by mercury (or other metal) toxicity—if it is not, then there is no point in treating it with chelation. Unfortunately, this question has become one of many “hot topics” in autism, with much heat and emotion obscuring the scientific data. The first step, then, is to look past the emotion and political maneuvering and examine the data.

When it was first proposed, the idea that autism might be due to mercury poisoning showed a good deal of promise. After all, mercury is a well-known neurotoxin and, additionally, was used as a preservative (thimerosal) in the vaccines children received. With a degree of biological plausibility and a known exposure, the next step was to look for epidemiological data.

One of the problems that complicates the search for the causes and cures of autism is the assumption that it is a single disorder and that all cases are caused by the same thing. This is in contrast to a disease like AIDS in which all cases are brought on by the HIV virus.

What is diagnosed as ‘Autism’ is actually likely to be more than one physical syndrome. Because Autism is a DSM diagnosis and based solely on behavioral criteria, the diagnosis does not address the different sets of physical anomaly clusters that researchers are finding when they look at the biology of ‘autistic’ patients.

One research group has recently made a distinction between two types of autistic profiles. One, labeled complex autism and occurring in about 30% of autism cases, presents with smaller head size, greater chance of low IQ, lower rate of siblings with the disorder and seems to have close to a 1:1 ratio of occurrence between boys and girls.

The other, essential autism, presents with larger head size, few structural brain abnormalities and has a ratio of 7:1 boys to girls.

This is a huge confounder to any epidemiological study, even a well designed one, that looks at all cases of diagnosed autism with out differentiating between groups with different phenotypes.

In discussing research into the causes of autism (in this case the genetic cause), one of the researchers commented, “…Studies haven’t found anything because they’re looking at a big heterogeneous group — a mishmash of people with different etiologies,” Takahashi said.”

One could postulate that only the larger head size group displays autistic symptoms because of mercury poisoning, as mercury toxicity does not always present with impaired IQ; and because in vitro thimerosal toxicity studies preformed at the University of Kentucky showed that estrogen has a protective effect against, and testosterone exacerbates the damage of, ethlymercury as a neurotoxin.

In light of this new information it seems that a better question than, “is autism is caused by mercury toxicity” which is the question largely being asked in these epidemiological studies, would be, “are cases of mercury toxicity being misdiagnosed as autism”.

The answer to that question cannot be found in a large epidemiological study.

The authors of the the final IOM report on the thimerosal/autism relationship in 2004 stated themselves that the epidemiological research it was relying on to clear thimerosal as a cause of autism would not pick up on a sub-set of the population that was genetically vulnerable to mercury poisoning.

If that is the case, then how much more so to these studies fail to give us meaningful data if the children who may be mercury poisoned are members of two different subsets being confused with one another?

Unfortunately, well-designed studies take a while to complete and publish.

Well designed studies do take time to complete and publish.

This is further delayed that by the fact that health authorities are neither attempting to complete or publish them. Despite years of parents requests, the public health authorities have not yet begun to design, fund or even discuss studying the effects of thimerosal on developing children, nor the safety and effectiveness of chelation on autistic patients.

[Update: I have heard that there are 2 government funded studies getting underway on the effects of thimerosal. I will try to find them and confirm exactly what they are. Still no govenment funded chelation/autism studies.]

Thimerosal was invented in the 1920’s and it’s only safety test was carried out in 1930 on 22 patients with terminal meningococcal meningitis. Patients were followed for several days until their deaths. No long term health problems were noted in the study because the patients had no long term health.

When the FDA was created, thimerosal was grandfathered in and has never been safety tested it to this day despite the fact that it has been implicated in toxic illness every few years going back to 1947.

I will be repeating this point through out my critique of this paper.

This delay left an information vacuum that a number of people immediately began to fill with assertions that autism definitely was or certainly was not caused by the thimerosal in vaccines. This did not make any progress toward settling the question, but instead polarized the issue before the arrival of any real data.

Lurking in the background, undetected in the tumult, were data that could have pointed the way. At least two countries—Canada and Denmark—had removed thimerosal from their vaccines in the 1990’s (Canada 1994, Denmark 1992) and yet had both experienced rises in autism prevalence similar to those in the US and UK.

The findings in the Denmark study have come under serious criticism. When the data of study was reviewed, it was found that the sampling presented fatal flaws. The low incidence of autism during the use of thimerosal can be attributed to the fact that the database that was used only tracked inpatient cases of autism at the time. At the point in time where thimerosal was removed, the database was expanded to include cases that were diagnosed at a large clinic outside of Copenhagen where 20% of the countries autistic patents were diagnosed. At the point in time where thimerosal was no longer used, but the cases of autism seem to have skyrocketed, the database had expanded further to include all cases of autism, inpatient and outpatient, in the country.

The study is further compromised by the fact that several of the coauthors were employed by the Statens Serums Institut, the government owned vaccine manufacturer who would be held liable if it was indeed found that the use of thimerosal in vaccines contributed to autism.

[Update: Kristjan has pointed out here that the Danish health care system and liability laws are different from ours and no such legal liability exists for the Statens Serums Institut. I still wonder what might motivate these researchers to stand buy this study and not protest its poor use. More on that in the comments here, here and here.]

Finally, even if the study were reliable, applying it to the U.S. population as the IOM has done presents problems. Children in Denmark were administered less than half the amount of thimerosal of US children and it was given over a longer period of time.

Further, American children are subject to an autism rate at least 10 times that of Denmark. It seems to me to be like doing a study of Sickle Cell Anemia in Denmark and applying it to the population of Baltimore. Clearly children here have some other intervening factor that increases the threat, be it genetic, environmental or even the thimerosal dosage.

As for Canada, I have seen this mentioned in several places, but I have never seen the actual study. If you have it or know where I can find it, can you please email me so I can look at it? Thanks in advance.

Update: Shannon from British Columbia reports that there is no Canada study or even any Canada data to be studied. She reports that they don't keep track of autism rates and don't offer services. She also reports that thimerosal removal from vaccines was left up to the provinces and that many are still on the shelves. See her comment in the section below for a more detailed explanation.

Additionally, while the childhood vaccines in the US included three (DTP, HiB, HepB) with thimerosal, in the UK, for the past two decades, only the DTP vaccine contained thimerosal. This meant that, despite having a constant thimerosal exposure for nearly twenty years, children in the UK experienced the same rise in autism prevalence.

In 2003, the first study, from Denmark, showed that the prevalence of autism in that country had risen steeply even though thimerosal had been removed from vaccines in the early 1990’s. This study was greeted by howls of outrage from some that advocated the connection between thimerosal/mercury and autism—the authors were roundly disparaged and their integrity and objectivity were impugned. This did not change the fact that the autism prevalence in Denmark has continued to rise, following the same pattern as autism in the US and the UK.

In September 2004, a study from the UK showed no association between thimerosal exposure and autism . At the same time, a review of ten epidemiological studies of autism and thimerosal found that the few studies that found an association between thimerosal exposure and autism had serious methodological flaws. Chief among these flaws was using the Vaccine Adverse Event Reporting System (VAERS) as a source of data.

The chief problem with the VAERS data is that reports can be entered by anyone and are not routinely verified. To demonstrate this, a few years ago I entered a report that an influenza vaccine had turned me into The Hulk. The report was accepted and entered into the database.

Because the reported adverse event was so… unusual, a representative of VAERS contacted me. After a discussion of the VAERS database and its limitations, they asked for my permission to delete the record, which I granted. If I had not agreed, the record would be there still, showing that any claim can become part of the database, no matter how outrageous or improbable.

Since at least 1998 (and possibly earlier), a number of autism advocacy groups have, with all the best intentions, encouraged people to report their autistic children—or autistic children of relatives and friends—to VAERS as injuries from thimerosal-containing vaccines. This has irrevocably tainted the VAERS database with duplicate and spurious reports.

I think that it is clear that the VAERS is a poor source for such studies. The CDC’s Vaccine Safety Datalink is a much better source, but the CDC has blocked it from being reviewed by independent researches despite the fact that congress has directed it to do so and claims that disallowing such access is a violation of federal law. The one team granted access in 2003 was severely limited in what they could do and thus their research effort, although it found a dramatic link, was completely tainted by the process and seems to me somewhat of a false start.

The CDC claims that they welcome research applications, but at last check they had not accepted any.

Testing for mercury

What, then, about the parents who have tested their children and found their mercury levels high? These children may have a legitimate problem with mercury poisoning…if the testing is valid. While laboratory accuracy—and cost—is an issue with many of the “mail-order” labs, a more serious problem is the manner in which the specimen is collected.

Dr. Laidler seems to be saying that contamination during collection and overnight shipping can skew results, but I don’t feel that he has properly addressed the possible process by which mercury would begin to appear in urine samples that had none at the time of excretion.

Many practitioners who advocate chelation routinely use “provoked” or “stimulated” excretion studies. To do this, they administer a dose of a chelating agent (more about them later) and test the urine a few hours later. This practice will routinely and predictably elevate the urine mercury level to several times the “unprovoked” or “unstimulated” level.

What is not mentioned in this discussion of “provoked” excretion studies, is the context in which the study becomes valuable. The working theory in this case is that some autistic children are actually members of a sub-set with a genetic impairment to excrete heavy metals such as mercury. Straight forward blood, urine and hair tests for mercury that would identify mercury toxicity in typical subjects who have been victims of a large mercury exposure would be useless in identifying mercury toxicity in people who have no ability to excrete mercury.

In order to find out if these types of subjects have mercury in their tissue, it must be stimulated. If it is excreted in the urine after the introduction of a chelating agent, then it was present in the body tissue.

Since the normal values listed on the laboratory report are for “unprovoked” specimens, the results will be much higher than normal and can appear alarming.

“Normal values” seem to mean little in these results. When mercury is excreted during a DMSA challenge, it cannot be taken as a true measure of how much mercury is in the tissues. Like clowns coming out of a car, you don’t know how much is in the body until you count all of it when it comes out.

Several factors complicate a getting a true picture of how much is in the body, one being that DMSA binds to lead more readily than to mercury, so if lead is present, the mercury level may be artificially depressed.

Doctors have reported patients excreting up to three and four hundred times the mercury that the baseline showed on the initial challenge.

The only thing that can be said with much certainty is that if you give a chelating agent, and mercury comes out, then it was in there and treatment should continue until it stops being excreted.

The cost of many of the mail-order labs is also a significant concern. A brief survey of some of the bigger mail-order labs revealed that they charge between $175 and $300 for a “panel” of urine metal tests, including mercury. The local hospital lab charges $35 for a urine mercury test.

Being a parent that has paid $300 for such urine metal tests, I am all for lowering the price. However, if I woulda known then what I know now, that the first time I did such a test on my son I would find mercury and lead, and that the chelation we have done as a result would help my son make the progress that he has made, I would happily sign my car over to the lab that delivered me these results.

But that's just me.

[scarcasm alert]I believe a good way to lower the costs of the test in this free market, would be many labs offering this standardized test, and doctors regularly screening children with ASD, ADHD, verbal and developmental delays, and those who have exhibited symptoms of vaccine injury after thimerosal containing vaccines, for mercury poisoning. That might be something that the government could look into.

[Update 2007 - the free market prevails. My son's last urine toxic metals test this month cost $65]

In most cases, the other metals included in the “panel” or of little or no use—there is no research or clinical data that connects some of these other metals to any disorder whatsoever.

I need more information from Dr. Laidler on this point. Does “no clinical data” mean that studies have been done and no connection has been found, or that no studies have been done?

Another questionable practice is the use of fecal mercury levels. The mercury in feces is a combination of ingested mercury (minus the amount that was absorbed) and any mercury excreted into the feces (usually in the bile)—there is no way to truly know how much mercury is being excreted without knowing the amount ingested and the amount absorbed. One thing that is certain, however, is that the fecal mercury level will be higher than the actual amount of excreted mercury, because of the mercury in the food we eat, the water we drink and the air we breathe.

I don’t know any families who have relied on fecal mercury levels in order to make a decision on whether or not to chelate, nor have I read of doctors relying on them. It seems an inaccurate measure of mercury toxicity for all the reasons you mention. Can anyone point me towards a source that recommends relying on it so I can further look into this?

[Update 2007: I have not heard of fecal mercury levels being used in the two years since this was written.]

This brings us (at long last) to chelation.

Chelation—what it is and how it works

Chelation works by using a compound has a stronger attraction (affinity) for mercury than the tissues of the body. Since mercury has a very strong affinity for sulfur, all the effective mercury-chelating agents contain sulfur. This does not mean that any sulfur-containing molecule can act as a chelator, since body tissues also have sulfur-containing components, which are what the mercury binds to. An effective chelator needs to have a higher affinity than body tissues.

This simple fact eliminates some of the compounds that are being touted as chelating agents for mercury. Glutathione, for instance, which has a sulfur-containing amino acid, is not sufficiently greater in its affinity for mercury than the body tissues to be an effective chelator.

The role that glutathione may play in autism is still emerging. Just a few months ago a study was released that found that 80% of autistic test subjects had some degree of glutathione depletion. After reading this I began supplementing over the counter oral l-glutathione and his speech began to progress more rapidly. He went from taking several minutes to put together a simple three word sentence, to spontaneous three and four word sentences in the matter of two months, and a week ago he began pointing things out to me (with his finger), saying, “look, look. Rain”.

I am genuinely interested to know specifics about exactly what it is doing and why such a weak chelator would be so helpful to him. I am looking forward to the question being studied further by federal health authorities.

Another widely used chelating agent, EDTA, not only has little affinity for mercury, but is also not absorbed when taken orally—it must be given intravenously.

There is now a product call Detoxamin that is EDTA in suppository form. Is this well absorbed form? Just curious.

The two agents that are most effective for chelating mercury are 2,3-dimercaptosuccinic acid (DMSA) and 2,3-dimercaptopropane-1-sulfonate (DMPS)
. DMSA has been widely used in the US—primarily for lead poisoning—and has a good safety record.

I am grateful to Dr. Laidler for pointing out that DMSA has a good safety record and is the standard treatment for lead poisoning. I have read many poorly researched reports that claim that all chelation is dangerous and it is quite frustrating.

DMPS has a long history of use in the Soviet Union, but has more toxicity problems. DMPS is popular with some practitioners because it causes a very large rise in mercury excretion, primarily by prompt clearance of kidney mercury stores, making it very useful for “provoked” mercury testing.

DMPS is not approved by the USFDA for any purpose, primarily because it offers no medical advantages over DMSA and is more toxic. Both can be given by mouth, but only DMPS is available in an intravenous form. Given that there is little or no difference in their effectiveness, a practitioner who wants to use DMPS should be viewed with suspicion.

In my experience, this is becoming more generally agreed upon in the autism community, although there are some doctors that have used EDTA and DMPS. I think that the trend seems to be coming back around to the use of DMSA.

The sulfur-containing groups in DMSA (there are two) are mercaptans, relatives of the odorant that is put in natural gas to make it smell bad. In short, it stinks. This can be a problem not only for the child who has to take it, but also for the entire family, as urine that contains DMSA will also have a foul, sulfurous smell. While some manufacturers claim to have overcome the smell “issue”, if the urine doesn’t smell foul, there is no DMSA being excreted and, therefore, no chelation happening.

While it is true that a sulfur odor does present itself, it has never occurred to me that it was a ‘problem’ or even something that a parent might take into account when deciding whether or not to chelate a child with mercury poisoning. Changing diapers more often or airing out the bathroom is little price to pay for a chance to get back your healthy, thriving child.

I did read about one family whose son carried an incredibly strong, unpleasant odor at all times during the first 6 weeks of his chelation. They lived with all the windows open and joked about all the stinky toxins that he was shedding.

They seemed really happy to have his odor problem replace their little boy’s autistic symptoms.

One preparation that deserves comment is transdermal DMSA (or DMPS)—a cream or ointment that is rubbed onto the skin, presumably to chelate mercury. Both DMSA and DMPS are highly water-soluble and do not dissolve well in fat or oil, which means that they most likely won’t be absorbed through intact skin. It is interesting to note that none of the individuals or corporations selling this preparation has—to my knowledge—performed the simple test necessary to prove that it is absorbed. In the absence of this simple bit of data, it must be assumed that it is not absorbed.

Lipoic acid—a sulfur-containing fatty acid—has also been touted as a chelating agent, although its effectiveness has not been well studied. It has the advantage of being considered a “natural” substance, but the few studies that have examined it have found it less effective than DMSA . It is fat-soluble and can potentially cross the skin, but this has not been tested. Its fat-solubility may (or may not) allow it to penetrate the brain tissue better, but this has also not been demonstrated.

Many doctors use this in conjunction with or following DMSA chelation because of its presumed ability to better penetrate into the brain. We have found adding ALA to our son’s chelation accelerated his progress.

Dr. Laidler again notes that ALA has not been tested. I would like to note that parents have been requesting chelation studies be conducted or funded by the national health authorities to no avail.

[Update 2007: We used ALA for a time with Chandler, but it seemed to feed the yeast in his gut and lead to hyperactivity so we did not use it for long. It has fallen out of favor with most DAN docs for this reason.]

A number of naturopathic remedies claim to remove mercury and heavy metals, but this claim is often based on the parent plant’s ability to remove mercury from the environment. As a result, these naturopathic remedies may themselves have a high degree of mercury contamination. At any rate, none of the naturopathic “chelating agents” have been tested to support their claims. In the final evaluation, only DMSA offers the combination of safety and effectiveness that would warrant its use. DMPS is a close second, limited only by higher toxicity.

Safety of chelation

Common less serious side effects of DMSA include nausea, vomiting and diarrhea. Skin rashes have also been reported—these are often erroneously referred to as “mercury rashes” and attributed to the removal of mercury. Regrettably, the same rashes are seen in people who have no mercury toxicity and are merely due to a drug reaction. A rare and unpredictable reaction (and potentially lethal, if not treated promptly) is Stevens-Johnson Syndrome, a severe drug reaction that presents with lesions on the skin and in the mouth and gastrointestinal tract.

My son, like many autistic children with intestinal yeast, can have an increase in hyperactivity while on oral DMSA, so rounds of chelation are spaced out so that a healthy gut can be maintained. Such breaks in chelation also allow for mineral supplementation to assure that the body is not stripped of necessary nutrients during chelation.

No significant adverse drug interactions have been reported with DMSA, but most of the children who received DMSA for lead poisoning were not taking other medications—and most of this experience predates many of the medications used
for autism. Increased zinc and copper excretion has been noticed in animal studies, but this is apparently easily corrected by moderate zinc supplementation. Copper supplementation is generally not needed.

The more serious side effects of DMSA are primarily bone marrow suppression and liver injury. In the thousands of children who received DMSA for lead poisoning, somewhere between 1% and 3% developed either elevated liver enzymes (a sign of liver cell injury), low white blood cell and/or platelet counts (a sign of bone marrow suppression) or both. In all cases, these abnormalities resolved after DMSA was stopped. However, these children were being monitored with frequent blood tests and received treatment for less than three months.

There is a danger that long-term use of DMSA without close monitoring could lead to irreversible bone marrow or liver damage. This has not yet been reported, but is a compelling reason to limit the duration of DMSA therapy and to have blood tests done every one to three months. The safety of DMSA—taken for less than six months—is well-established, but this safety has not been demonstrated over the long-term.

DMSA is available only by prescription and should only be administered under a doctor’s care for just such reasons. Unfortunately, so few doctors are treating autistic patients, for what is ultimately a medical disorder, there are just not enough good doctors to go around.

[UPDATE: Apparently you can get DMSA with out a perscription, which seems odd to me. IMO it should be only used under a doctors care.]

Also... long term studies of chelation should be undertaken by the CDC... but you knew I was going to say that.

Finally, there are as many dosing schedules for DMSA as there are practitioners who make claims about it. As perhaps a ridiculous extreme, one practitioner has asserted that DMSA must be given every two to three hours around the clock! This person also insists that failure to follow this schedule will result in more mercury being deposited in the brain. Fortunately, this is absolutely wrong! Doses as infrequent as once a week have been effective at removing mercury and lead, although at a much slower rate than the recommended dosing schedule of three times a day.

Until the mercury/autism connection is properly studied and the results are treated with honesty and transparency, chelation for children diagnosed with autism will remain to be part science, part guesswork. Yet another reason that the health authorities should do its due diligence and investigate chelation as a treatment for autism related mercury poisoning.


[1] Is autism due to mercury?

There is no convincing data supporting a link between mercury or thimerosal and autism. This is not to say that mercury and thimerosal cannot cause autism, just that there is no data to support the connection.

To say that there is "no data to support the connection" is not correct. There is a great deal of data, but the data is not conclusive. It consists of in vetro studies, primate and rodent studies, case studies and small population studies.

Many authors and investigators can still make the point, as Dr. Laidler does, that there is “no convincing data” because the health authorities charged with funding and disseminating such studies (on the scale that people are 'convinced' by) are not doing their job.

Chelation remains one of the most promising medical treatments for what is commonly diagnosed as ‘autism’, yet the government chooses to spend money instead on long term genetic research that will be of no benefit to children who were diagnosed with autism today.

The first large scale research project into chelation for those with autism is just getting underway at the University of Arizona. It is being funded by anonymous private donors.

[2] Mercury testing.

Mercury testing, especially if done with a mail-order lab, can be both misleading and overly expensive. If you truly suspect mercury poisoning, spend $35 for a urine mercury test at your local clinic or hospital—don’t spend up to $300 to get information of questionable accuracy and minimal utility.

I don't think that Dr. Laidler has made his case that the information you get for your $300 is "of questionable accuracy and minimal utility". It was mighty accurate and useful to us.

[3] Chelating agents.

Many of the remedies promoted to remove mercury and other heavy metals are either not effective, not safe or both. Of the available chelating agents for mercury, DMSA offers the best safety and the best effectiveness.

[4] Safety.

Despite its impressive safety record, DMSA is not without side effects. Long-term treatment with DMSA has not been studied (insert comment about how the government should study this-ed) and may result in serious problems. Close medical monitoring is strongly recommended if you decide to use
DMSA therapy on your child.

* * *

1. Is it not also true that even in the legitimate use of chelation for lead poisoning, there is no expectation of reversing whatever neurological damage has already occurred? I would think this would be another strike against the credibility of chelation for autism.
— Lisa Randall Jul 27, 03:37 PM

It is true that there are no guarantees that getting the mercury out of your child will cure their autistic symptoms, just as there is no guarantee that chemotherapy will cure cancer. Most parents faced with either situation are likely to give their child the chance at recovery even if the odds are not 100%. I do know of two children who did not respond to chelation therapy. Neither child was harmed by it and neither of their mothers regret trying it.

We have no guarantee that tomorrow, the last drop of Hg won't tumble out of our boy and his wonderful progress will come to an end. If it does, we will make yet another one of those course corrections that parents of special kids have to make. But at least we will know that we got him as healthy as we could.

2. The studies that have looked at removal of lead by chelation (that Autism Diva has looked at on pubmed) showed no improvement in IQ or behavior, (or both?)

Brain damage in general is not seen as reversible.

This makes logical sense. But this has not been my experience.

My son called me mommy until he regressed at 18 months in the fall of 2003. In June of 2004 I gave him 300mg of DMSA for his chelation challenge to see if he had mercury toxicity. He was given the dose around 8am and about 6 hours later he called me ‘Mommy’ for the first time in almost a year.

I was in my bedroom cleaning, and he came in and started pulling on my hand. I was trying to finish my task before I went with him to see what he wanted, so I was looking away from him. I thought I heard him say ‘mommy’ so I looked down, and instead of pulling my hand toward the door and looking toward where he wanted me to go, he was looking at my face and called me ‘Mommy’ three more times. I was completely stunned.

At that point I expected that his tests would come back positive for mercury, and they did. There was no question after that whether or not we would try chelation on him.

To respond to Autism Diva’s very good point, I no idea as to why DMSA would have an effect like this if his mercury has caused brain damage. It makes no sense that my son would improve that drastically in 6 hours.

I would REALLY like the federal government to clear this up for Autism Diva and me. They could... oh I don't know... do a study or something?

Some of the autism/mercury parents think their kids got toxified while in the womb from a rhogam shot that had thimerosal in it.

There’s no evidence for that...

Again I must repeat my mantra. There is no evidence that Rhogam plays a role in the development of autism because it has never been studied.

A year ago Lyn Redwood, the head of Safe Minds, was invited personally by Dr. Julie Gerberding, head of the CDC, to submit a wish list of research proposals to her. Among the requested research was a study to see if Rhogam could be involved with the development of autism. I spoke with Lyn last week and she said that neither the CDC nor Dr. Gerberding has never responded to the list that they asked be submitted to them.

I am a Rhogam mom and was surprised that this had not been looked at yet. I am waiting for the CDC and the FDA to go ahead and do this very necessary safety study on an injection that that they have already approved on pregnant women.

but besides that, they think that they can chelate the kid NOW and affect proposed damage do when the brain was developing? They obviously have no clue about brain development and probably have never looked into Fetal Alchohol Syndrome. There’s nothing that undoes that, but the kid can learn to use what he has to the best possible extent.
— Autism Diva Jul 27, 03:46 PM

Autism Diva will get no argument from me (except for the part where she suggests that as the parent of an autistic child I am clueless about brain development).

Why did my son respond so quickly?

I think that the government should study it and find out.

3. Because there’s no way of knowing how much improvement in a child’s behavior and abilities is the result of natural developmental processes, the only accurate way to test chelation would be to perform double-blind studies with autistic adults.

If you’re interested in an unscientific anecdote, I had all of my amalgam fillings removed 10 years ago and took chelation supplements for a few weeks. It was my dad’s idea; he is a major health faddist, antivax, supplements out the wazoo, toxic fumes in the woodwork, you get the idea.

I noticed some improvement in my sense of smell after having the amalgams taken out, but the main benefit was just the nice new pretty composite fillings.

I’m still just as autistic as ever.

So is my dad…
— Bonnie Ventura Jul 28, 09:38 AM

As in Bonnie's case, the anecdotal evidence I have seen seems to suggest the older you are, the less effective chelation is on autistic symptoms. The best results seem to be for children under five and progress seems to really slow down as children age.

I have read several stories though from people who have tried it on their teenagers and even on adults and some progress has been made.

Say it with me:

Sounds like something that the government should study.

July 28, 2005

Operation Red Fern

Someone once said that when your child is diagnosed with autism, you begin to meet a better class of people.

Extra mile for boy's best friends
Cross-country relay will keep them together

Friday, July 29, 2005
By Jacqueline Shoyeb, Pittsburgh Post-Gazette

The volunteers call the cross-country trip a doggie relay. The Kuehn family calls it a godsend.

For two Labrador retrievers, Trikzy and Daisy, and 12-year-old owner, Joshua, it's their lucky break.

Joshua, who is autistic and is calmed by the animals, was faced with the possibility he might have to give up the dogs for adoption after airlines told his parents it would be too hot in the cargo hold to fly the dogs to the family's new home in Phoenix.

So the Kuehns reluctantly put the dogs up for adoption, posting an e-mail on AutismLink, a Web site that provides information and support for families with autistic children.

But the response they got was not what they expected. A woman from Du Bois in Clearfield County told them, Your dogs are coming with you.

And so this morning, Trikzy and Daisy will begin the first leg of a three-part trip involving volunteers from two states who will eventually take the pair to their new home in what they call a doggie relay.

"When I heard the news I lost it," said dad Jeffrey Kuehn, a security guard from McDonald. "Strangers are doing this and that's what's amazing about it."

The effort is especially important to Joshua, who is diagnosed with Asperger syndrome, an autism disorder that limits his communication and social skills.

"They help through the battles and through with making friends and everything," Joshua said. "They're the only ones I can really talk to."

The dogs comfort him, said his mother, Kathleen.

"It was a godsend because I don't think my son would go without them," she sad.

The idea for the dog relay began last week when Jenny Webster, of Du Bois, saw the Kuehn's e-mail seeking an adoptive family for the two dogs on AutismLink.

The family was relocating to Phoenix for better jobs and warmer weather, and couldn't bring the dogs with them. After the airlines turned them down, the family found out that a professional pet transporter would charge them $1,400, an amount they couldn't afford.

"He wasn't going to have his dogs, his best friends," said Webster.

"I have an autistic child and I know how attached he can be to things and people and animals. If I were in that situation I would have hoped someone could help me out."

Touched by their story, Webster sprang into action, sending out e-mails asking for volunteer drivers to help the cause.

In a few days, people from across the nation were responding with donations from $5 to $200 and a few offers to drive.

Through the AutsimLink Web site, Webster, a stay-at-home mom, secured two drivers and $800 for gas.

"This has been fast," she said.

"But I'm up for it. It's going to be fun."

Two others up for it are Jenn Engle of Albuquerque, N.M., and Swissvale resident Lenore Wossidlo.

The plan, which was ironed out yesterday goes like this:

Wossidlo picks up the dogs in McDonald today and will meet Webster at the intersection of Interstates 79 and 80 in Mercer County.

In the second pass-off, Webster will take the dogs about 1,500 miles to a restaurant in Elk City, Okla., which is about 100 miles west of Oklahoma City.

Engle will then pick up the dogs and head another 550 miles to Albuquerque, where Jeffrey Kuehn will be waiting to take the dogs the rest of the way to Phoenix.

None of the volunteers have met Joshua, but they all say they couldn't let him be separated from his longtime pets.

"This is a boy with autism who is moving across country to a new school, new friends, new neighbors," said Wossidlo, who also has an autistic son.

The disability makes even simple changes like driving a different way to the store confusing and upsetting, said Dr. Nancy Minshew, a psychiatry and neurology professor at the University of Pittsburgh School of Medicine.

"Other kids may be excited about getting a new room, new bedspread and more, but this is the kind of kid who will probably want everything to be the same," she said.

In Joshua's case, the dogs help calm him when things do change, said his mother, Kathleen.

Trikzy, a black lab, was Joshua's a birthday gift six years ago. Daisy was rescued from an abusive home two years ago. Both dogs are close to him, but 68-pound Daisy is extremely attached, she said.

"The yellow lab sleeps with him and tells him what time to go to bed," she said.
"When he goes to school, she cries. Those two are so attached it's unreal."

For Wossidlo, who also is involved in autism awareness efforts, the doggie relay is more than strangers driving two dogs 2,100 miles across the country. It's a show of compassion, she said, for an autistic boy and his dogs.

"And it all started a week and a half ago," she said, "with one e-mail saying, Can you take my dog?"

(Jacqueline Shoyeb can be reached at jshoyeb@post-gazette.com or

If you don't click this link and contribute $5 to the effort, then you have no soul.

You can keep up with the doggie relay over the weekend here.

The Ground Rules

Several weeks ago I posted the RFK Jr. article, Deadly Immunity, to my site. I posted that I had begun to look into the details of the Verstraten study and it seemed that there was sufficient evidence show that malfeasance had taken place. I said that I would be posting on it “soon”, but soon became not so soon as the more I read, the more I found that there was to read.

The entire story about what the CDC knows and when they knew it seems to be about as complicated as the mercury/autism theory itself. So at some point I need to take a break from researching and just start writing about what I am finding. It is time for me to dive into the discussion.

Please keep in mind, I still have not finished digging through all there is to dig through, so this is open to update and correction, and especially open to finding additional sources of information. I want this to be an open dialogue.

I am attempting to use as many primary sources as I can, but I am not ruling out the use of secondary sources. I also want to take care to evaluate the information primarily based on the information, rather than on who is offering it. Reputation of the person and conflicts of interest certainly need to be factored in when evaluating an argument, but I don’t want to dismiss an argument based only on who brought it to the table. The argument itself should rise or fall on its own internal logic and fit into the bigger picture as much as possible. The assertions of Offit, The Geires, McCormack, Haley, Gerberding, Kirby, Fineberg, Redwood, etc. should all be heard.

I also want to explain that my approach to the question of whether or not the mercury in thimerosal contributes to autism. Most of the discussion seems to start with autism and try to work backward to see if mercury is the culprit. That is certainly an important line of inquiry, but what find less of an emphasis on, and what is more interesting to me at the moment, is the idea of starting with mercury and working forward to see if you find autism.

If the mercury/autism holds water, then the arguments traveling in each direction should meet in the middle.

Feel free to quote me, but please ask permission to use my images (I reserve all rights, but I try to be generous, however I might have to say no once in a while).

I am hoping that this will encourage HEALTHY debate, and not merely be another place on the internet where people on both sides vent their frustration on one another. Differing opinions and interpretations of information are graciously invited. Contempt is not.

Good natured satire is always appreciated as always.

Also, please bear with me if there are long pauses between posts. I have an autistic son ya know.

The Wrong Side Of History

Update: I just got a call from the AJC that they are going to print my letter.

Yesterday I read an opinion piece printed in the Atlanta Journal Constitution by a member of the editorial board. I wanted to post it here so that I could both answer it, and record it for posterity. It is an example of the kind of harsh, myopic criticism against parents like me who question the conclusions of the Institute of Medicine and choose to treat their child’s autism medically.

The response I make to the article is not a full one, but a succinct one that I felt would have a better chance of being printed in the letters to the editor. To try to respond to all the problems and biases in this piece would require a book. A book like Evidence of Harm for example.

Distrust feeds ignorance of health facts
Mike King
The Atlanta Journal-Constitution
Published on: 07/28/05

A recent survey by the Atlanta-based American Cancer Society found that roughly half of Americans believe that surgery causes cancer to spread. And about 25 percent think that science has already found a cure for cancer, but it is being held back by a profit-driven health care industry.

It has to do with trust.

The continuing controversy over whether autism is linked to trace amounts of mercury used as preservative for childhood vaccines is in this same category. In recent years the Centers for Disease Control and Prevention, the Food and Drug Administration, the Institute of Medicine (the medical arm of the National Academy of Sciences) and the American Academy of Pediatrics have all debunked the concern that thimerosal, the preservative, causes or even contributes to autism. At least five major scientific studies have come to the same conclusion.

Yet the number of people who believe the link has been firmly established — parents of children with autism, in particular — continues to rise. They received a significant shot in the arm last month when Robert F. Kennedy Jr. wrote an article in Rolling Stone magazine suggesting the nation's public health community is conspiring with drug makers to cover up the damage done by thimerosal.

A government bureaucracy that willingly subjects children to the risk of autism in exchange for propping up the pharmaceutical industry certainly wouldn't want a cure for cancer to become widely available, now would it?

This is lunacy.

"It's really terrifying, the scientific illiteracy that supports these suspicions," said Dr. Marie McCormick, chairwoman of the Institute of Medicine panel that issued its report on the research about thimerosal and autism last year.

It's one thing to refuse to consider the scientific evidence; it's quite another to act out of willful ignorance and subject yourself or a loved one to what amounts to medicine-show cures. Yet that's what some parents of children with autism have begun to do with chelation therapy, a treatment that should be confined only to patients with acute metal poisoning.

Chelation involves using drugs to remove heavy metals from the body, but when administered improperly — as in using it for patients with autism — it can lead to liver and kidney damage and other problems. Similarly, some autistic children are prescribed a dozen or so vitamin supplements to take every day, and their diets heavily restricted as a way to deal with the condition, according to testimony in lawsuits. Some are subjected to 160-degree saunas to sweat the metal from their systems.

The panic stems from a 1999 FDA finding that the amount of mercury contained in the normal immunization schedule for children exceeded the agency's guidelines. By 2001, no vaccines for children had more than a half of a microgram of mercury in them — an amount that is roughly equal to that found in an infant's daily supply of breast milk.

But the controversy continues, fueled at least in part by the alarming rise in the diagnosis of autism. In the 1980s, the condition was found in roughly one child in every 10,000 births. By 2003 that ratio had changed to 1 in 166.

Suspicion is so strong in some circles that CDC researchers told The New York Times recently that they have received threatening letters and phone calls. The Atlanta-based agency has increased security because of the threats, the newspaper reported.

Although it hasn't felt such a backlash, the American Cancer Society — located across the street from the CDC — must understand the frustration. The organization asked 957 adults without cancer to answer a true-or-false quiz. Fifty-four percent said they either weren't sure or were convinced that surgery spreads cancer; 27 percent said they believed a cure was available but being withheld; and nearly 20 percent believe pain medications were ineffective in cancer patients.

Over the years, cancer and pain-management specialists have made remarkable progress in that arena. What a shame that message hasn't gotten through to some patients and their loved ones.

— Mike King is a member of the editorial board. His column runs Thursdays.

Here is the letter I sent to Mr. King in response to his column:

Your Autistic Opinion

Mr. King,

I read your piece and wanted to let you know my thoughts on it.

As the parent of a mercury and lead poisoned child who has been diagnosed as autistic, and as one who has spent the last year watching him recover through the biomedical interventions that you seem to mock in your writing, I have to tell you that my first impression on reading it was, "Wow. I wonder how this guys is gonna feel when he begins to realize that he is on the 'wrong side of history'".

Thousands of kids with autism are improving, and some are even becoming indistinguishable from their peers through these biomedical interventions. I believe, with what I am seeing in my son's life and in the other autistic children that I know, that in ten years a more refined version of the interventions that you malign now will be the SOP in the treatment of autism.

You can argue about studies all day long, but you can't argue with results.

Next time, interview a few of these "scientifically illiterate" parents to see just why they dismiss the opinions of Marie McCormick. I think you will be surprised how scientifically literate they are, and just how poor Ms. McCormick's judgment is when it comes to weighing the scientific literature on autism.

Bottom line, parents believe what they are seeing with their own eyes. Here is what I am seeing with mine: http://adventuresinautism.blogspot.com/2005/06/my-boy-can-talk.html

I only hope that your column does not deter some parents who have a newly diagnosed child from seeking medical treatment for autism, which is a medical disorder.

Ginger Taylor

Ummm... so which is it?

Is mercury dangerous?

Teen charged with causing mercury spill at high school
(Kent County, July 27, 2005, 5:13 p.m.)

A student accused of spilling mercury at Cedar Springs High School is now being charged with a felony.

On May 11, authorities say 18-year-old Ryan Gorter was caught playing with a dime-sized amount of mercury in class. That prompted school officials to shut down the school for two days while crews cleaned up. The cleanup cost the district more than $40,000.

Now Gorter faces charges of malicious destruction of property, which carries up to ten years in prison, as well as unlawful possession of a harmful device. He has been released on bond.

Or is it safe?

"Our review revealed no evidence of harm caused by doses of thimerosal in vaccines..." - The FDA

Fortune Favors The Bold

Pint-sized autistic boy reaches amazing heights

Posted: 07/27/2005 10:47 am

Aidan is only 7-years-old but has already climbed nearly 90 summits
He's accomplished something most adults will never achieve and he's only 7-years-old but age isn't the only thing Aidan Gold has had to overcome.

Aidan Gold of Bothell, Washington is already reaching for the stars and never was he closer to them than when he summited Mount Rainier. His parents have the pictures to prove it and others on Rainier were shocked to pass this pint size climber.

Warren Gold, Aidan's father, says, "Everyone would stop and wait and watch. Part of it was curiosity and part of it people were just concerned about him."

Aidan says no need to worry. He's a veteran who's climbed many a mountain. His parents are avid climbers and early on Aidan started following in their footsteps quite literally.

"I think I have the focus," Aidan says.

That focus comes from a type of autism called Asperger's Syndrome.

"What seems to come with this is an intense ability to focus on things the child is interested in,” says Warren.

It allows Aidan do amazing tasks, like create elaborate origami and climb 14,000 peaks to the awe of others.

His parents admit they've gotten questions about safety. "To be honest, I think it's more dangerous to drive on our freeways. In the mountains we can control our risks to a high degree," Warren says.

What is undeniable is this young boy's ability to take his disability and make
it into an advantage.

"I don't think we really realized what a blessing it really was," says Warren

The Golds say they have found no official record of who is the youngest
to climb Mount Rainier but they've been told that Aidan is not the first 7-year-
old to reach the peak.

July 22, 2005

The Power of Truth

This week Chandler and I went to Washington to attend the Power of Truth rally, and to lobby our representatives in Congress to ban the use of thimerosal in vaccines and fund autism research. I will be posting the details of our trip later.

For now I will share the images of the rally. I have decided to post them with out comment. I don't think they need any from me.

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