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The price of anti-vaccine fanaticism: Case histories

One of the major themes of SBM has been to combat one flavor of anti-SBM movement that believes, despite all the evidence otherwise, that vaccines cause autism and that autism can be reversed with all sorts of “biomedical” quackery. Many (but by no means all) of these so-called “biomedical” treatments are based on the false view that vaccines somehow caused autism. I and my fellow SBM bloggers have expended huge quantities of verbiage refuting the pseudoscience, misinformation, and outright lies regularly spread by various anti-vaccine groups and two celebrities in particular, namely Jenny McCarthy and her boyfriend Jim Carrey. Most of the time, we discuss these issues in terms of the harm to public health that is done by falling vaccination rates due to the fear engendered by the message of the anti-vaccine movement and the threat of the return of vaccine-preventable diseases that once wreaked havoc among children.

There is another price, however. There is a price that is paid by autistic children themselves and their parents. It is a price paid in money and lost time. It is a price paid in being subjected to treatments that are highly implausible from a scientific standpoint and for which there is no good scientific evidence. It is a price that can result in bankruptcy, suffering, and, yes, even death.

It is a price, I think, that is best demonstrated through a few case studies. This is a situation when anecdotes have their use.

CASE STUDY #1: “MARY” AND HER AUTISTIC SON “SAUL”

What inspired me to write this post and to try to list some of the more horrific examples of treatments and pain to which autistic children are subjected to was a post by a guest blogger at Left Brain/Right Brain entitled Truth and Consequences: The Anti-vaccination Movement Exacts a Price:

But behind the scientific and legal consensus that vaccines do not cause autism lies a hidden world, the autism “biomedical” Yahoo! and chat group world. There is no decline in the number of posts in this world. It’s a thriving, and growing community, one that has fueled the popularity of the anti-vaxers, and the certainty of those parents who consider their child “vaccine-injured”. It has spurred the spending of millions of dollars on supplements, hyperbaric treatments, off-label prescription medications, and myriad other autism “biomedical treatments”. These “treatments” are almost all of no proven benefit, some are ridiculous, some relatively benign, and many potentially dangerous. This article will explore the journey of one mother, “Mary” in her efforts to cure her son “Saul”. While the case of Mary and Saul, documented in her own words is shocking and appalling, Mary is not alone nor is she an extreme case. She is one of thousands of parents seeking autism “biomedical treatments” on the internet.

What this guest blogger says is absolutely true. I have seen it for myself, having spent many hours over the last five years lurking on such groups, all too often horrified at what I’ve read. What I have seen on these groups is one reason why I have become so vociferous in my attitude against the anti-vaccine movement and the biomedical quackery movement that it has spawned.

To get a flavor of what I’m talking about, I will reproduce the list of what Mary has treated Saul with from when he was diagnosed with an autism spectrum disorder at age 3 until age 8:

  • Acetyl L Carnitine – acetylated form of L-carnitine (quaternary ammonium compound biosynthesized from the amino acids lysine and methionine)
  • Actos (pioglitazone) -prescription drug which carries a black box warning
  • Cal/Mag Butyrate – mineral supplement
  • Candex – marketed as an enzymatic remedy to treat the yeast infection candida
  • Carnosine -amino acid
  • Chelation – process of removing heavy metals
  • Andrew Cutler protocol (at least 50 rounds)
  • DAN protocol for 2 1/2 years.
  • 15 IVs of EDTA & Glutathione
  • 5 IVs of DMPS and glutathione
  • 5 combined IVs DMPS/EDTA/Glutathione
  • Chiropractic
  • Diflucan – prescription anti-fungal
  • Dimethyl glycine – modified amino acid
  • Enhansa – Enhanced absorption curcumin supplement
  • Epsom salt baths
  • Essential fatty acids
  • Flagyl (Metronidazole) – prescription anti-fungal
  • Folinic acid – modified folic acid
  • Folapro – highly absorbable folate
  • Galantamine – prescription drug used for the treatment of mild to moderate Alzheimer’s disease and various memory impairments
  • GFCF diet – gluten-free-casein-free diet (3 years)
  • GFCF diet with digestive enzymes for infractions
  • HBOT – hyperbaric oxygen treatment (Mary owns her own; Mary owns a Vitaeris 320)
  • HLC MindLinx Powder by Pharmax – probiotic
  • IM Bicillin – prescription intramuscularly injected form of penicillin
  • Inositol – a nutrient
  • IVIG – Intravenous Immunoglobulin – prescription used to treat immune dysfunction, contains the pooled immunoglobulin G (IgG) immunoglobulins from the plasma of approximately a thousand or more blood donors
  • Klaire Labs Detoxification Support and Factor 4 – probiotic
  • Liquid Bodybio PC – phosphatidylcholine with essential fatty acids
  • Liquid grapefruit seed extract
  • Low dose Naltrexone – an anti-opiod
  • L-theanine – amino acid
  • Magnesium supplements
  • MB12 – Methylcobalamin, vitamin B12 – shots
  • MB12 – Methylcobalamin, vitamin B12 – spray
  • Nicotine patch
  • Nizoral – antifungal
  • Nystatin – antifungal
  • OLE – olive leaf extract
  • OSR (N,N’-bis (2-mercaptoethyl)isophthalamide, also know as 1,3-benzenediamidoethanethiol) – an untested synthetic chemical
  • Oxytocin nasal spray
  • PCA-Rx – purports to remove toxins from the body
  • Phosphatidylcholine
  • Pro Bio – probiotic
  • Quercetin – antioxidant flavinoid
  • Reduced glutathione cream
  • Threelac -probiotic
  • Transdermal NAC (N-Acetyl Cysteine)
  • Valtrex (valacyclovir) – used to treat infections caused by herpes viruses
  • Vitamin C
  • Vitamin E
  • Zithromax – antibiotic

Note that not an inconsequential number of these are treatments advocated by Jenny McCarthy, including many of the supplements, the gluten-free, casein-free diets, the vitamins, and more. As quoted here, Jenny has said:

We believe what helped Evan recover was starting a gluten-free, casein-free diet, vitamin supplementation, detox of metals, and anti-fungals for yeast overgrowth that plagued his intestines.

And later:

A lot of people are scared to chelate, which is the process of pulling metals out of the body, but it has triggered many recoveries. … Everyone has their own recipe to recovery, but your child might need chelation to get there. With a DAN doctor, I mean these guys are so good, they will help, you know, make sure your child is safe, your child has the minerals it needs to do it. … I’m, of course, scared to do it with Evan, but I plan on doing it this summer because Evan still suffers from seizures……

All this biomedical woo comes at a cost. For instance, in one message Mary listed the monthly cost: $2,800 to $3,500 for IVIG, plus $500 for supplements and chelation therapy. But that’s just money. It’s always possible to get more money, even after pouring it down the rathole of quackery. What is not possible to take back the discomfort, fear, and pain that Saul was forced to endure for no potential benefit. Indeed, Mary even appears at certain points to have recognized this:

Sometimes I feel like a mad scientist and my poor kid is my guinea pig.

This is not the only time I’ve heard a statement like that. Contrast Mary’s statement with Jenny McCarthy’s frequent mantra about her son Evan, “Evan is my science.” McCarthy’s is the “biomedical chant” of a person at the beginning of the “biomedical journey” or one whose child appears to be developing since his diagnosis. In contrast, the statement above by Mary is the same idea, much diminished, in the mind of a woman who has been at it for years and is tired but can’t bring herself to admit that all the expense and pain inflicted on her child have garnered no benefit. She doesn’t view the whole biomed thing as an exciting science experiment to cure her child anymore; it’s become Frankenstein. This is the contrast between the new and chipper versus the weary and jaded, between the enthusiastic and the resigned.

And the “biomed” discussion groups reinforce it all:

Thousands of parents are members of these yahoo groups. Once inside the cozy echo chamber of the group, there is general acceptance that vaccines cause autism. Members expressing opposing views are drummed out of the group. It is taken as an article of faith that there are children recovering from autism by the use of these biomedical interventions. The parents get poorer, the quacks get richer, and the innocent children are the victims of often dangerous and painful experimentation at the hands of the people who are supposed to care for them the most.

Moreover, because a not insignificant minority of autistic children develop, sometimes to the point of losing a diagnosis of being on the autistic spectrum, there are always a few stories that appear to show that “biomed” works, thus providing plenty of false hope to fuel the echo chamber and lure in new recruits. As Prometheus puts it:

What happens to parents whose kids don’t get better? For the most part, they are encouraged – by other parents and by the practitioners themselves – to “keep trying”. They are also encouraged to pay close attention and to “think positively” – but they are never encouraged to doubt.

In most cases, parents who give up on “alternative” therapies simply fade away. They have enough going on in their lives that they don’t feel the need to “tell their story”. Especially when it’s not wanted.

If you have the opportunity, check in to one of the many “biomedically oriented” Internet groups and see what happens when somebody questions the idea that “biomed” can “recover” autistic children. At the least, they will be admonished – “Don’t stand in the way of other parents getting their children the help they need!”. More likely, they will be told to “Shut up!” and banned from the group. In some cases, they will be harassed and even threatened.

So, it’s not too likely that you’ll hear many dissenting “stories”. It seems that everyone’s story is valuable…unless it contradicts the received wisdom of “biomed”.

The warm, cozy, “nurturing” atmosphere, where never is heard a skeptical word. The parents there believe so deeply because they’ve never been exposed to data or criticisms that contradict their world view. Not surprisingly, they construct conspiracy theories to explain all the evidence against them and why they aren’t taken seriously. Indeed, a number of “biomed” cultists have appeared in the comments of the post. Reading those comments, of which there were 370 as of early this morning I can see just how such parents can make autistic children pay the price of their delusions. Look in particular for comments by Christel King and “Jen,” for examples of just how invested in their world view these parents become.

CASE HISTORY #2: KENT HECKENLIVELY, HIS DAUGHTER, AND COSTA RICAN STEM CELLS

Kent Heckenlively blogs for the anti-vaccine blog Age of Autism. We’ve met him before, albeit a long time ago, when I poked some not-so-gentle fun at him for fearmongering about vaccine ingredients, including sucrose. However, there’s one thing that I haven’t addressed about Mr. Heckenlively before, and that’s what he has been subjecting his autistic daughter Jackqueline to in a vain attempt to cure her. Worse, he has been blogging about it, even going so far as to post reports of her “provoked urine tests” to the world. What first made me aware of Mr. Heckenlively’s saga was a post is entitled I Officially Join the Mercury Militia, and it is one of the most horrifying things I’ve seen on AoA. All I could think as I read the post is how sorry I felt for Jacqueline, whom Mr. Heckenlively has subjected to all manner of dubious therapies in the pursuit of his belief that she is “mercury toxic” and that is the cause of her autism. It also shows just how far down the rabbit hole it’s possible for an otherwise intelligent person to go when that person is ignorant of science and fixates on one idea after another about what causes autism. The post begins with some background:

It may seem strange that six years after I started in the bio-medical world, beginning with the gluten/casein free diet for my daughter, and encompassing just about every other known treatment, that I’d questioned whether mercury played any role in her problems.

The reason was I simply didn’t have any good proof of high mercury levels in her, despite more than three years of chelation, and forty-two UTM tests from Doctors Data. I did have abundant evidence of aluminum retention. She usually averaged somewhere between eight and thirteen times the normal amount of aluminum excretion, and in one test, after we’d gone after strep, excreted eighty-one times the normal amount of aluminum.

Forty-two urine tests from Doctor’s Data, Inc. (DDI)? For those of you not familiar with this laboratory, it is one of the favored laboratory of dubious practitioners everywhere because of its lax methodology and tendency to find high levels of mercury and other heavy metals in just about every sample, as well as its tendency to participate in chelation-provoked urine testing for mercury, which is guaranteed to cause the excretion of a lot of mercury in a normal person. Indeed, there is no scientific basis for the lab tests that DDI does and reports for “provoked medal excretion.” As for the aluminum, where on earth did he think his daughter may have gotten exposed to so much aluminum, even if Doctors Data’s results were accurate? Certainly the amount in vaccines is far too small to have caused such a seemingly huge aluminum overload. After all, it sounds as though Mr. Heckenlively was subjecting his daughter to chelation-provoked tests, and mercury is not the only metal chelated and excreted in the urine. Several are, and will appear elevated after a course of chelation. It’s the same problem as with mercury. Provoked urine tests for heavy metals give us no information about what’s really going on because they’re an exceedingly artificial test and, well, provoked.

Worse, DDI is inherently unreliable. Its methodology was once tested by Dr. James Laidler thusly:

Doctor’s Data was tested by Dr. Laidler in a way that any parent could do, almost. Dr. Laidler made up a false urine sample using known mercury free ingredients at a university lab, he divided the false urine (distilled water and creatinine) and sent it off in 2 urine specimen containers provided by Doctors Data.

He sent it to DD and got back 2 different results and both high in mercury.

What I wonder, though, is just how much did all those useless and unreliable tests cost? Worse, despite all this search, Dr. Heckenlively was undeterred:

I was comfortable with aluminum as the reason for her problems because of the data, but also unsettled. Despite getting out huge amounts of aluminum she didn’t get noticeably better. I’d observed that accounts of kids getting better after mercury excretion usually involved somewhere between three to four times the normal amounts of mercury being excreted from their bodies and measured in the urine toxic metals tests. Even her most extreme test, when everything else was coming out, never even made it to twice the normal amount.

In other words, despite all the chelation therapy to which he subjected her, Jacqueline did not improve. However, she was subjected to a large number (at least 42, if in fact a urine metals assay was done after each chelation session) of repetitions of a useless treatment followed by an uninformative test. Worse, the treatment is not risk-free. Although I don’t know what specific chelation regimen Mr. Heckenlively subjected his daughter to, but, as we shall see later, chelation therapy can kill.

Mr. Heckenlively then says that this failure “raised a number of questions for me.” Unfortunately, apparently not a single one of the questions raised was whether he was following useless quackery and should stop subjecting his daughter to such treatments before he goes too far off the reservation and really endangers her. Indeed, Mr. Heckenlively’s questions were exactly the wrong questions in a reality-based world. Unfortunately, in the fantasy “biomedical” world into which he had immersed himself and Jacqueline, the questions made sense to him:

Did girls simply retain aluminum rather than mercury as the boys seemed to do? Did the aluminum do greater damage than the mercury? Were there still vast amounts of mercury in my daughter, that for some reason I simply couldn’t get her to excrete? The answers to these questions are vital because each one requires a different approach.

If my daughter was an aluminum kid, rather than a mercury kid, then something else had to be at work. When other children excreted high levels of mercury, they generally got better. Jacqueline’s levels of aluminum dropped to roughly normal levels by the summer of 2008, but there wasn’t a change.

Again, Mr. Heckenlively kept pushing the chelation therapy, and there was still no improvement. Years of “treatment” and dozens of chelation treatments with no improvement. Did Mr. Heckenlively start to doubt “biomedical” therapies? Not at all. True, he did start to doubt whether it was aluminum or mercury, but unfortunately he did not move back into science-based medicine. Instead, he went even further down the rabbit hole into even less evidence-based (and far more expensive) “biomed.” If it wasn’t the mercury and the aluminum, Mr. Heckenlively decided that stem cells must be the answer:

That finding made me consider brain damage. Maybe she was simply damaged. How might you fix that? Stem cells were my answer. (Cost of $15,500 for treatment courtesy of a grant from her Grandpa Heckenlively.) In August of 2008 we traveled to Costa Rica for four days so my daughter could receive 16 million stem cells, eight million through an infusion in her arm, and eight million infused through a line in her spine so it would have direct access to her brain.

But two months after stem cells there wasn’t a change. I was counseled to wait for more time to pass. My regular autism doctor was also counseling me that at some time the mercury would come out. But I’d been waiting more than three years to see mercury and my daughter wasn’t getting any younger.

This part of the story is what I find most appalling and heartbreaking. Mr. Heckenlively subjected his daughter to stem cell quackery. Yes, quackery. So not only did Mr. Heckenlively hit his daughter’s grandpa up for over $15,000, but he did it for a completely unproven and almost certainly useless treatment. Worse, given the dubious nature of the offshore clinics that serve up this stem cell quackery, there’s no guarantee that what the doctors at this clinic infused into Jacquelin’s blood and CSF were even real stem cells. In fact, very likely they were not. Not only is Mr. Heckenlively spending his own family’s resources, but he’s spending the retirement fund of his daughter’s grandfather.

Even more appalling, the doctors in Costa Rica injected the stem cells directly into Jacqueline’s cerebrospinal fluid. That’s right. Let me say that again. They did a lumbar puncture in order to inject these “stem cells” directly into her cerebrospinal fluid! Remember, this being a clinic in Costa Rica, clearly set up there in order to avoid the more stringent regulations of the United States, these cells were of unknown origin and purity. There are no words to describe how appalling I find that. The potential complications are enormous, and for any physician to do this outside the context of a well-designed clinical trial overseen by a properly constituted Institutional Review Board is utterly unethical. That these quacks would not only do this but take advantage of credulous and desperate parents like Mr. Heckenlively to sell their therapy for $15,000 a pop should shock and horrify anyone with any common sense, much less with a modicum of knowledge about science and medicine. This is the real harm of the antivaccine movement and autism quackery. I understand desperation, but desperation and credulity have made Mr. Heckenlively vulnerable to the blandishment of just about any quack with an autism “therapy” to peddle, no matter how implausible from a scientific basis. Worse, never does it seem to occur to him just to accept his daughter the way she is and stop subjecting her to IVs and invasive procedures like lumbar punctures for no benefit. Instead, he moves on to a new form of woo that is even more implausible than “heavy metal detoxification” or stem cell therapy, one I call the Magical Mystery Virus:

It was at this point I ran into a doctor who told me these children were infected with viruses that hid from the immune system and lowered cellular energy. And he had a treatment. Illumination with UV light and his magical mystery formula put onto a plastic sheet would activate an alternative energy pathway which would go after the viruses. But of course, he wasn’t a big believer that heavy metals formed any part of the autism problem.

I did the treatment and started seeing changes. Specifically, she’s had about a 50-75% drop in seizures, and started to gain in physical strength. This was shown most dramatically in her ability to hold a marker and do some coloring. I’ve included two of her pictures so you can see the difference.

“Alternative energy pathway”? More like voodoo. If Mr. Heckenlively had a single clue about biology, he would know that “lowering cellular energy” and “alternative energy pathways” are almost always quackspeak. What does it mean for an “alternative energy pathway” to “go after” the (nonexistent) viruses. Nothing! It means nothing! But it sounds all science-y, good enough to suck in parents like Mr. Heckenlively.

This incident also illustrates a principle of autism quackery. Because autism is a condition of developmental delay, not stasis, and because it frequently has periods of stasis followed by periods of rapid development followed by periods of stasis again, if a parent tries enough quackery, sooner or later by sheer coincidence alone he or she will be seem to be able to match up a remedy with an apparent improvement. That is likely what occurred in this case. Even if it is not, because of the highly variable course of autism, it’s impossible to say if this magical mystery treatment did anything without subjecting it to a randomized clinical trial. Still, even then Mr. Heckenlively was not satisfied. He moved on, back to mercury, and, after forty-three tests, he finally got what he wanted: a finding of elevated mercury. In fact, this is a similar principle. Because of the variability in tests and because the reference ranges are set to encompass 95% of the population (at least in real labs; in dubious labs like DDI, I don’t know), if you do enough tests, sooner or later an anomaly will occur, particularly if multiple values are measured in each test. That’s one of the first things I like to teach medical students on the wards. Panels of lab values, in which 7 or 13 or even 20 different things are measured may be convenient for the lab, but the more of them there are the more likely there will be an abnormality or two, even in a “normal” patient. Moreover, Mr. Heckenlively’s analysis of his own tests on Jacqueline do not mean what he thinks they mean, as Prometheus and Dad of Cameron showed in this analysis.

The important question, however is: Is Mr. Heckenlively’s daughter any better? Not really. But because he so desperately wants to believe in what he is doing Mr. Heckenlively remains undeterred:

Maybe after more than four months the stem cells are starting to kick in. Maybe she’s got more cellular energy and it’s causing the mercury to be excreted. Maybe after three years of chelation we’ve drained enough of the swamp that the mercury is finally coming out. I have my opinions about which one is really at work, but I don’t have a definitive answer. As you can probably guess, I’m running an additional test to confirm the results. (There is a 1 in 43 chance this is a coincidence, although the cadmium and nickel excretions are similarly high, and they usually increase shortly before or in combination with mercury excretion.)

“More cellular energy” causing the mercury to be excreted? It hurts me to read that sentence not so much because of the wishful thinking that is behind it but because of what that wishful thinking is causing a young girl who doesn’t know any better and depends upon her parents to give her the best treatments possible to be subjected to. Does anyone doubt that Mr. Heckenlively’s love for his daughter will lead him to continue in his quest indefinitely flitting from one quack to another looking for an answer? Sadly, I don’t. Does this mean that Mr. Heckenlively is stupid? I don’t think so. Ignorant of science? Yes? Stupid, probably not. Desperate? It would appear so. I like to look at this sort of behavior as the same phenomenon that we see when we see highly intelligent people believe in creationism, the 9/11 Truth movement, or other conspiracy theories. The mercury militia (and, indeed, the antivaccine movement of which the mercury militia is a subgroup) to which Mr. Heckenlively proudly proclaims membership has indeed become like a religion–more like a cult, in fact. It attracts parents desperate to need to believe that there is a cure for autism and willing to pursue it at almost any cost and, worse, it seems every bit as capable of coopting intelligence in pursuit of doctrine and of convincing parents that pseudoscience and even outright magical thinking (the Magical Mystery Virus, for instance) are science.

I do try to empathize with Mr. Heckenlively. He has an autistic daughter, and raising such a child is a huge challenge. I don’t know if I could handle it myself. It’s quite possible that I could not. I also have no doubt that he really and truly wants to help his daughter and that he loves her dearly. Unfortunately, he has no real understanding of science or medicine and is clearly a credulous soul, easily persuaded of the value of the quackery du jour. Never does it occur to him that Jacqueline is not getting better because she is not mercury toxic; that she is not “brain damaged” and stem cells wouldn’t repair that “damage” even if she were; and that she is not infected with some magical mystery virus. In the meantime, Mr. Heckenlively subjects his daughter to round after round of chelation and even invasive procedures such as a lumbar puncture to inject “stem cells” of unknown origin, spending thousands upon thousands of dollars, both his and his daughter’s grandparents’, in the process. Both he and his daughters are victims of quackery, and I have sympathy for them both, although far more for his daughter. Mr. Heckenlively is being taken advantage of. His normal parental love for his daughter is being twisted into a useless and expensive search or a “cure” that doesn’t currently exist and is unlikely to come into existence in our lifetimes.

The stories of “Mary” and Mr. Heckenlively demonstrate one thing. Once a parent becomes ensconced in the cozy, reinforcing world of the biomed movement, it becomes very difficult for them to leave that support system, even when all the various promises that their children’s autism can be cured come to naught. A few ultimately abandon the movement and move on. (Indeed, parents like Jim Laidler did just that.) But many of them do not. Many of them, unfortunately, listen to the blandishments and keep trying. Some, like Mr. Heckenlively, will try fake stem cell therapies. Others will even try chemical castration.

CASE STUDY #3: SUICIDE IS NOT PAINLESS

I’ve said it before, and I’ll say it again. Raising a severely autistic child is an incredible challenge. I probably couldn’t do it with my current job, and I don’t know if I could even do it at all, period. My admiration for parents who can pull it off and especially for (but not limited to) those who can continue to love their children unconditionally, rather than the idealized version of what they think their children would be were it not for autism, is immense. Having interacted with a number of parents with autistic children, I can understand, at least as much as it is possible for someone who is not one of them, just how stressful their lives must be. I also think that insurance coverage and support services for autistic children tend to be inadequate. That being said, there is another cost parents who fall into the rabbit hole of “biomed” sometimes pay, and that’s guilt. Let me explain.

The key message of the anti-vaccine movement is that vaccines are responsible for a lot, if not most, autism. The key concept, in an amazing feat of confusing correlation with causation, is that autism diagnoses started skyrocketing in the 1990s, beginning around the same time the childhood vaccination schedule was expanded to include more vaccines. Never mind that numerous large epidemiological studies have utterly failed to find a link between either mercury in vaccines or vaccines themselves and autism. There is a corollary to the idea that vaccines cause autism, however, a corollary that is not lost on a lot of the parents of autistic children who fall into “biomedical” woo. That corollary is that, if vaccines cause autism, then the parents are responsible for having made their children autistic by getting them vaccinated.

The result is sometimes suicidal impulses, as described in a post by a guest blogger at Age of Autism, Angela Warner, entitled Autism: When Enough Is Too Much:

I think it is important for this subject to be talked about in our community. I’m pretty sure that most at one point have considered taking this action. A last action.

I had a dream for my own family, and my children, just as we all do. My dream, and our reality, for a long time were polar opposites.

On November 14, 2005, I decided I had had quite enough. There was much more going on in my life at that time than autism and being a military spouse. I’ll spare you the details, but it was a lot of weight on my shoulders, weight that I had been carrying for over 20 years. Autism on top of this? Now I have to carry this too? I felt a tremendous burden of guilt, that I had caused the boys to have autism. I couldn’t take anymore.

Read it again: I felt a tremendous burden of guilt, that I had caused the boys to have autism.

That I had done this. That I was responsible. That night, because of the guilt, Warner tried to kill herself:

When Dave got home, I had another drink. I don’t know if I was done with those gross catch plates, and that was my cue that I was done? I don’t remember. I was going to meet the porcelain God, and not in the way that you think. I think I may have had another drink. I needed to be numb before that “meeting”.

Dave greeted me, and went upstairs to change out of his uniform. I calmly stopped whatever it was I was doing, walked into the bathroom, got down in the puke position, lifted the toilet seat and proceeded to slam my head into the porcelain bowl. I slammed it so hard that Dave heard it all the way upstairs. There was more slamming of my head on that toilet I use every day, over the course of the evening. At one point I locked myself in the bathroom when Dave left me unattended to go do something, and he heard more slamming of my head. I remember him screaming at his co-worker that this person could not let me into the bathroom unattended. That is the only way I even remember that his co-worker was here. Dave had to take the door handle off to get to me. It’s still jacked up from that evening.

Yes, I am one determined bitch. I had simply had enough. Honestly, with how hard I hit my head, and how many times, I should be dead. I guess God had other plans. It was shortly after this that I made the pact with myself.

Fortunately, Warner failed to kill herself. Likely, she really did want to live and didn’t hit herself on the head as hard as she thought. Also fortunately, it’s really pretty difficult to kill oneself that way, given how hard the skull is and how painful it is to hit oneself on the head repeatedly with a hard object. That she even tried to do it, however, signals just how much the guilt that the “biomed” movement engenders in parents, in essence blaming them for having caused their children’s autism by having them vaccinated, can add to the already considerable life stresses that raising such children can produce. Indeed, a commenter on AoA chimed in:

Thanks for your authenticity. I feel, as a single mother of three, that I want to be around for every moment. However, its really interesting that I was heading to the accupuncturist today to request a treatment for dealing with the feeling of guilt that I caused this because I knew about the concerns of vaccines but did not follow my intuition or empower myself, and caved in to the pressures of the pedicatrician and school requirements thinking, we’ll be okay, chances are slim, perhaps I’m overreacting to the research, perhaps they’re right/I’m wrong, etc. I want to be able to somehow let go of that guilt as I believe it causes illness to be left incomplete on an issue so intensely.

It’s not hard to imagine that parents, after having come to the end of all that “biomed” has to offer with no improvement in their children, could enter a deep and profound depression, full of despair, to the point that suicide starts to look like the only way out. After all, in the “biomed” world, not only did these parents cause their children’s autism, but they’ve failed to cure it. Then, there’s Jenny McCarthy out there saying things like this:

You know, I could in two months turn Evan completely autistic again. I could do it completely through diet. And maybe getting some vaccine boosters. Through diet, I could load him up again with all the things that will aggravate the damage that was done. Right now, what happened now was that I healed him to the point where he got everything back to this baseline level and it stays there like this. But I mess with it at all–boom!

In this quote, Jenny arrogantly asserted that she has complete control over whether her son stays “recovered” or “relapses” into autism, and the “biomed” movement promotes this sort of thinking. Thus, when a child fails to “recover” or even improve despite a parent’s maximal effort with “biomed,” it’s not so unreasonable to speculate that guilt over that failure could lead to depression severe enough to contemplate suicide or even murder-suicide.

CASE STUDY #4: THE DEATH OF ABUBAKAR TARIQ NADAMA

In 2005, Abubakar Tariq Nadama, a five year old boy with autism, was brought to Pittsburgh from the U.K. by his parents. The reason they brought him to America is in order for him to undergo chelation therapy for his autism. It’s not entirely clear why they didn’t have him undergo this treatment in England, but, whatever the reason, they brought him to an ENT surgeon turned “alternative” physician and DAN! doctor named Dr. Roy Kerry. Tariq did not survive repeated encounters with Dr. Kerry. He died during a session of IV chelation therapy designed to “detoxify” him of mercury. Worse, this complaint shows that Tariq’s end was not pleasant, as the district attorney’s charges show. Here’s the note in Tariq’s medical chart from his initial consultation with Dr. Kerry:

We don’t have the entire record at all. Mother left her entire volume of his records home. But we have been in communication with Dr. Usman regarding EDTA therapy. He apparently has a very high aluminum and has not been responding 10 other types of therapies and therefore she is recommending EDTA, which we do on a routine basis with adults.

Note that Tariq had been subjected to ten different other forms of what was almost certainly non-evidence-based “therapy” before his parents found their way to Dr. Kerry’s office. Sadly, as the first two case reports above show, this is not at all atypical of parents so desperate for a “normal” child that they will allow themselves to be seduced by any dubious treatments that come along. In addition, to me this sounds as though Kerry never treated a child with IV chelation before. There’s a saying in pediatrics: “Children are not just little adults.” It’s bad enough that Kerry was giving chelation therapy to treat autism, an indication for which it is most definitely not appropriate, but he didn’t even seem to know the dose for a child of Tariq’s size!

The note continues:

We therefore checked him to it … But on testing for the deficiency indicator we find him only indicating the need for EDTA at the present time. Therefore we agree with Dr. Usman’s recommendation to proceed with the treatment. She recommends 50mg per kilo. He is 42 pounds today. So we’ll treat him with a 20-kilo child and give 1 gram of EDTA. We diluted it 1:1 with saline. Started the IV with saline. After a good blood flow in the right antecubital fossa with 3 other assistants and mother controlling him and the papoose board. Had a good TV return flow. We then introduced the EDTA. Checked return flow frequently during administration. Gave the IV over approx. 5 minutes. Then rinsed with saline. He had no difficulty toleration it. No infiltration occurred. We’ll have mother collect the urine for 12 hours. The most important are the first six hours for toxic and essential minerals. When we get that report back we’ll proceed with further injections as indicated on approx. a weekly basis. Recheck the levels in 4-6 lV’s depending on his response … Initial impression: Autistic Syndrome, Heavy Metal Toxicity, Candidiasis, Multiple Food Allergies … Roy E. Kerry, M.D.

Odd, there’s no mention of mercury, even though this was also in Dr. Kerry’s notes:

wants to have iv … edta injection … an iv push. mother states Tariq is autistic due to immunization shots he was a normal pregnancy .. 1st shots were given the day he was born … no sx noted until age 18 mo … has had 12 other inoculation by time he was 18 mo old/…

Indeed, for the most part, all we see in the notes are mentions of lead. It just goes to show that, should the mercury militia finally be forced to accept that the evidence just doesn’t support their belief that mercury in the thimerosal used as a preservative in vaccines is the cause of autism, there’ll always be another bogey man in vaccines that will be blamed. The mercury militia is just a manifestation of a larger antivaccination movement.

Here is the chilling part of the complaint:

58. On August 23, 2005, a third and final round of Disodium EDTA chelation therapy was administered to Tariq.

59. Theresa Bicker administered the IV Disodium EDTA to Tariq.

60. Bicker requested Doctor Mark Lewis, D.O.) to come to the treatment room to help restrain Tariq for the 1V push of Disodium EDTA.

61. Respondent was not present when Tariq received chelation on August 23, 2005.

62. Theresa Bicker administered the Disodium EDTA pursuant to Respondent’s orders.

63. Tariq’s medical chart fur August 23, 2005 reads “TV push ordered by Dr. Kerry and his protocol…. prior to procedure patient was alert and oriented. No acute distress. Mother was present in room ….. “

64. During the IV push, Tariq’ s mother, Marwa Nadama said that something was wrong.

65. Doctor Lewis took Tariq’s vitals and then Tariq went limp.

66. Bicker called 911 and helped with CPR while the ambulance was en route.

67. Tariq was taken by ambulance to Butler Regional Hospital.

68. On August 23, 2005, at Butler Memorial Hospital, Tariq was pronounced dead.

And so a five year old child who did not have to die died. He was held down for an IV push, went into cardiac arrest, and died. Kerry recklessly used a dangerous IV push of disodium EDTA just because he didn’t think Tariq would sit still, and Tariq’s heart stopped because it dropped the calcium level in his blood to levels that interfere with the proper electrical activity of the heart. Among the actual charges, it still irritates me, for the same reason that it irritated me when Dr. Mary Jean Brown of the CDC blamed Dr. Kerry for using the “wrong” kind of EDTA, rather than blaming him for using chelation therapy at all for a condition for which it is not indicated and for which there is no evidence of efficacy.

Unfortunately, ultimately the district attorney decided to drop all criminal charges:

Criminal charges have been dropped against a U.S. doctor accused of causing the death of a British five-year-old autistic boy by giving him the wrong drug.

Dr Roy Kerry was trying to use chelation therapy on Abubakar Tariq Nadama in 2005 after his parents moved to the U.S. to seek treatment for his autism.

Chelation therapy, approved in the U.S. for treatment for acute heavy metal poisoning, is regarded by some as a promising treatment for autism.

The U.S. drugs authority disagrees and Kerry was charged last year with involuntary manslaughter, endangering the welfare of a child and reckless endangerment.

However, yesterday a judge in Pittsburgh, Philadelphia, allowed the district attorney of Butler County to drop charges.

Kerry, 70, still faces a civil lawsuit from Abubakar’s parents, Mawra and Rufai Nadama, who have returned to Britain since their son’s death.

In a petition, prosecutor William Fullerton asked that the charges be dropped after reassessing the merits of the case and “given the existence of additional and more germane judicial avenues for addressing the conduct of Dr Kerry”.

Kerry had surrendered his license during the case, but it will now be reinstated, a U.S. State Department spokeswoman said.

I could not find any information about what has happened with Dr. Kerry since May 2008. A recent search of the Pennsylvania Department of State shows Dr. Kerry’s medical license to be under suspension. However, it also lists the last date of renewal as December 22, 2008, which was 7 months after charges were dropped.

The bottom line is that the belief that vaccines in general, and that mercury in vaccines in particular, cause autism led to the death of an autistic boy at the hands of Dr. Roy Kerry. Worse, Dr. Kerry appears almost certain to have gotten away with his incompetence in using implausible and unproven “treatments” that resulted in the completely avoidable and unnecessary death of a five year old boy.

IT’S NOT JUST PUBLIC HEALTH

Although the “biomed” movement to treat autism is not strictly all about the vaccines, it is largely about vaccines. If you delve into various “biomed” websites, chat rooms, and discussion forums, it will not take you very long to see “vaccine injury” being blamed for autism and being used as a rationale for this treatment or that. Lately, the “biomed” movement has–shall we say?–broadened its focus, I suspect in response to the unrelenting stream of studies failing to find any link between vaccines and autism, to include various “environmental” factors. These factors include–of course!–heavy metals and the various unnamed and unmeasured “toxins” so beloved of alt-med. Even so, reversing “vaccine injury” is still a major, if not the major, focus of the “biomed” movement.

Over the last few years, I’ve generally focused mainly on the problems with declining vaccination rates that result fromt he fear mongering of the anti-vaccine movement. Indeed, fourteen years ago in the U.K., measles was viewed as having been largely controlled, with very few cases every year. Since Andrew Wakefield’s dubious science, MMR vaccination rates have plummeted and measles has returned with a vengeance, to the point where it is considered endemic again. This is one major harm that the anti-vaccine movement has brought about and is continuing to bring about.

The other harm, however, is directly to autistic children themselves. The anti-vaccine movement paints them as being “toxic” and “vaccine damaged,” with the “real child” hiding within, waiting to come out if only just the right combination of “biomedical” woo can be found to reverse the “damage” done by vaccines. This view results in a false hope that leads parents to subject their children to an ever lengthening list of dubious and unproven treatments, as Kent Heckenlively, “Mary,” and the parents of Abubakar Tariq Nadama did. Many of these treatments are not benign. Some are painful and invasive, as injecting “stem cells” into the central nervous system or, as was described on an NBC news special about Andrew Wakefield and Thoughtful House, subjecting autistic children to unnecessary colonoscopies. Meanwhile, parents who buy into the “vaccines cause autism” myth torture feel duped and themselves with guilt over having had their children vaccinated, thus “causing” autism.

These are the harms that result from believing the unsupported myth that vaccines cause autism and that dubious therapies unsupported by science can do anything other than enrich the “practitioners” who sell them.

Posted in: Health Fraud, Public Health, Science and the Media, Vaccines

Leave a Comment (14) ↓

14 thoughts on “The price of anti-vaccine fanaticism: Case histories

  1. Gabor Hrasko says:

    Sorry for the off-topic, but I can not figure out a more appropriate place to ask…

    I used to write (critical) articles about CAM and I reached some reputation about it here in Hungary. However I still have to learn a lot, so I tried to register for the annual congress of the Hungarian acupuncturist that – this year – also includes a homeopathy section (of course I was ready to pay full price). You should know that in Hungary homeopathy and acupuncture can be practiced only by real doctors. On the other hand I have a biology degree (BSc) “only”. Of course they know that I am the president of the Hungarian Skeptic Society.

    My registration request caused some nervous waves and it was refused. As they wrote the congress is for doctors only. I checked some other congresses (of real medicine) and those would accept my registration.

    I am not very falmiliar with the situation. Is it normal that medical congresses can be attended by doctors only? You can reply directly to my email: gabor@hrasko.com

  2. DevoutCatalyst says:

    “…To get a flavor of what I’m talking about, I will reproduce the list of what Mary has treated Saul with from when he was diagnosed with an autism spectrum disorder at age 3 until age 8…”

    Bill Maher was wrong. The only jail time surrounding alternative medicine is the prison of alternative medicine itself.

  3. Dr Benway says:

    The key concept, in an amazing feat of confusing correlation with causation, is that autism diagnoses started skyrocketing in the 1990s, beginning around the same time the childhood vaccination schedule was expanded to include more vaccines.

    You failed to mention the increase in piracy on the high seas at about this same time.

    Gabor Hrasko, perhaps you have a middle name you sometimes use as a first name, or a stage name?

  4. Deetee says:

    I too was appalled at Henkenlively’s actions. The tragedy is that none of these parents who are troo bleevers will ever be able to turn back the clock of rationalism; they are way too far down the rabbit hole (to use your own analogy). This is exactly what happened with Christine Maggiore. The more things change, the more they stay the same……

    As a slight off topic comment on the destructive forces deployed by antivaccine quackery, in the UK a little girl called Anna Duncan died not long after having had an MMR vaccine. Her death was attributed to a vaccine reaction by her father, even though the real cause of death was proven at autopsy to be complications from a particularly severe case of chicken pox.

    Anna’s father blamed his wife, Veronica, for having had the child immunised. Their relationship (understandably) did not survive the fall-out from this tragic episode. Veronica, emotionally unhinged through grief, guilt and jealousy, injected insulin into a friend’s healthy baby girl causing possible permanent brain damage. She was initially charged with attempted murder but subsequently convicted of assault after confessing to her actions.
    http://www.dailyrecord.co.uk/news/scottish-news/2007/10/26/bereaved-mum-poisoned-friend-s-baby-86908-20012013/
    http://www.timesonline.co.uk/tol/news/uk/crime/article2741054.ece

    I covered this sorry episode in a blog post here :
    http://www.layscience.net/node/561

  5. Chris says:

    Broken Link, that same poster who thinks that only the “fittest survive” obviously does not let that sentiment extend to children with food allergies. She is apparently going through a great deal of effort to make sure they do not get gluten.

  6. jmorrison says:

    Anti-SBM Movement? This seems a bit of a stretch. In the Internet age people shop for medical guidance and treatments like they shop for a car or vacation package. It’s simply a sad reflection on the application of science that SBM has little to “sell” in this market, and so quacks rush to fill the void. Even this may be a an exaggeration – but I don’t know the extent to which complementary medicine has actually displaced scientifically validated therapies like ABA/CBT as opposed to simply “complementing” conventional treatment. Sounds like an interesting research topic that would advance science, garner funding, advance careers and also do almost nothing to improve outcomes. (I’m not saying reducing quack medicine wouldn’t improve outcomes, just that it would just be another unread paper locked away in journal that few have access to or the inclination to read).

  7. chaoticidealism says:

    I am autistic and my mother is fascinated with alternative medicine. Thankfully, I was lucky enough to get most of the necessary vaccinations as a child before my mom became convinced they were dangerous.

    As a child, I was on the GF/CF diet; ironically, those were the worst years of my childhood. (Most likely this is coincidental.) It’s ironic you don’t hear about the times when the “miracle diet” doesn’t do squat! I’m not lactose intolerant and I haven’t got celiac disease and there’s no reason to go on that diet unless you are; but Mom didn’t get that.

    I didn’t get it all that bad, compared to some. There were just lots of pills to swallow, and most of them “natural herbs” that neither hurt nor helped me. I think I escaped some of the danger because my mom is into “natural” stuff only, and most of the herbal stuff you can buy in the US is only about as bad as going out to a random field and eating the weeds you find.

    I didn’t damage my health, but the other results weren’t so negligible. Mom was pretty much in denial about me being autistic (I can talk and she figured all autistic people are nonverbal; actually only a minority are), so she never helped me learn any of the stuff I needed to learn, and that autism made hard for me to learn; so after I left home, I was still so bad at social skills that I spent a year and a half in what, looking back on it, was probably a cult.

    When I first left home I couldn’t pull myself together well enough to keep myself clean or eat a healthy diet; and when I tried college I failed out because I had no organizational skills and everything took me ten times longer than it took everybody else. Eventually I ended up in the hospital thanks to self-injurious behavior that I had been using to try to deal with sensory overload (my theory is that the adrenaline you get from physical injury forces your brain into overdrive, so you can temporarily handle a flood of overwhelming sensation; I believe this is why many autistic people bang their heads or bite themselves… it is not an efficient way to handle stress but if you don’t know any other way can be attractive.) I was finally kicked out of my apartment, and spent a summer sleeping on a couch in the apartment of the first friend I had ever made. I was twenty at the time.

    Getting proper treatment has turned a lot of that around. In addition to everything else, Mom refused to tell me I was autistic; so I couldn’t research it and find out how to solve my own problems. (I’m rather good at research and I want to be a scientist.) When a psychiatrist with an autistic son finally clued me in about what must have been glaringly obvious to her, I started learning all those things that they could have taught me when I was a little girl. I’m still learning. I’m still on disability now but there’s a special program that’s letting me finish college and getting me the extra help I need to get through. I think I wouldn’t have to be on disability, if only they had started teaching me earlier. I feel really ashamed that I have to take any money at all because the government is short on money as it is. If I had learned earlier, I wouldn’t have failed college when I first tried it, when the task of taking care of myself was still completely overwhelming. (I can do it now.)

    The “cure mentality”… the idea that a child can’t be happy unless they’re cured… the idea that anything but a “normal life” is unacceptable… it robs children of their childhood. For me, it meant a great deal of lost time. Things I could have been taught when I was a child, I had to learn the hard way. I know everybody looks for the dramatic cases where a child is hurt or killed or obviously abused; but for me it wasn’t that dramatic, and yet it still hurt me… For me, it simply resulted in a lot of lost time, time I could have spent learning the things I needed to live as an autistic woman in a non-autistic world.

    Mom still blames vaccines. I’ve told her over and over that it’s genetic, and summarized the journal articles I’m reading that keep on saying “high heritability” over and over. I wonder sometimes if Mom mightn’t be a little autistic herself, because she’s so fascinated with alternative medicine and spends all her time thinking about it.

    The fact is that I am never going to have a “normal life”. I would never have had one even if I had had a perfect childhood and I don’t want one even if I could get it. What my mom doesn’t understand is that not having a normal life is not the same as having an unhappy life. I wish parents would understand that to us, autism IS normal, and that the ideal life isn’t a magical cure, but just growing up to be a happy, healthy autistic person with useful things to do. It is sad when a parent can’t accept that their child is different. It is sad to have a part of yourself rejected by the person who is supposed to love you most.

    Ironically, my littlest sister, who had no vaccines and has spent her whole life on organic food and herbal supplements, shows every sign of being easily diagnosable with Asperger’s syndrome. I’ve made sure to mention my diagnosis to her, and told her it runs in the family, so that she will at least be able to research it and learn more about herself, and maybe, when she’s on her own, can get a proper doctor to see if she does have it. Mom has kept her home-schooled because she refuses to vaccinate, so no teachers can pick up on the way that at fourteen she is a Mac fanatic and a philosopher and a year ahead in school, but has never made a friend nor yet learned to brush her hair in the morning and still speaks in such a pedantic fashion that one would think she were reading out loud…

    Apologies for the long reply.

  8. Scott says:

    That is an extremely insightful and moving story. Many thanks for sharing.

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