Respectful Insolence

The price of anti-vaccine fanaticism

Welcome back. I hope you and yours who celebrate Christmas have had a happy one. Ours was kind of mixed and bittersweet for reasons that I don’t particularly feel like going into now, although sooner or later I will probably have to say something about it. In the meantime, as much as I hate to be a downer right after the holidays, when many of my readers have the day off and are looking forward to hanging out with family or friends or maybe attacking the Boxing Day sales in the U.K. or just the sales in the U.S. and elsewhere. However, just before the holidays and shortly before I gave a certain neurosurgeon the gift of not-so-Respectful Insolence for Christmas.

It came from the Age of Autism.

I know, I know, I’ve said before that I try to avoid that site these days, and I do. There is nothing there other than pseudoscience, logical fallacies, and conspiracy theories about big pharma, usually laced with ad hominem attacks against skeptical and science-based bloggers like myself accompanied by whining about how the critics of the antivaccine movement are so unfair in making ad hominem attacks against the bloggers at AoA. (Never mind that the attacks usually aren’t ad hominem; they’re about what the AoA crew writes and how lacking in reason and evidence it is, and only sometimes about the bloggers themselves. Never mind that an ad hominem can be justified if the target’s behavior warrants the ad hominem.) It all becomes tiresome after a while, and it rarely manages to appall me any more as it did in the past. I must have grown a thick skin. Even when J.B. Handley launches a childish, all out broadside, it doesn’t even faze me anymore.

And then I saw a post by the ever-excitable and clueless Kent Heckenlively, he who makes bizarre speculations about autism science while clearly understanding nothing about it. The post is entitled I Officially Join the Mercury Militia, and it is the most horrifying thing I’ve seen on AoA. In fact, it’s the most horrifying story of autism quackery that I’ve seen since the death of Tariq Nadama at the hands of a chelationist. All I could think as I read the post is how sorry I felt for Mr. Heckenlively’s autistic daughter, whom he has subjected to all manner of quackery 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 Doctors Data? 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 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. 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.

What I wonder, though, is just how much did all those tests cost? Worse, despite all this search:

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 that chelation therapy, Mr. Heckenlively’s daughter has not improved. 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, chelation 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 world of quackery into which he had immersed himself and his daughter, 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 quackery and dozens of chelation treatments with no improvement. Did Mr. Heckenlively start to doubt the quackery? 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) quackery. 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 much so that Suzanne Somers endorses various stem cell “cures.” 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 these quacks infused into Mr. Heckenlively’s daughter 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, these quacks injected the stem cells directly into Mr. Heckenlively’s daughter’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 his daughter’s cerebrospinal fluid! Remember, this being a clinic in Costa Rica, 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 (not a Geier IRB) 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 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. His desperation and credulity have led him to endanger his daughter. 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 quackery, 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 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 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 Doctors Data, 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.

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 will 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 fundamentalist religion or creationism. 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 cannot. I also have no doubt that he really and truly wants to help his daughter. Unfortunately, he has no 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 his daughter is not getting better because she is not mercury toxic; she is not brain damaged, and stem cells wouldn’t repair that “damage” even if she were; that she is not infected with some magical mystery virus. In the meantime, he subjects his daughter to round after round of chelation and even invasive procedures such as a lumbar puncture to inject cells of unknown origin (I highly doubt they’re real stem cells), spending thousands upon thousands of dollars in the process, even going after the grandparents’ savings 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.

But you know what’s worse. Look at the comments after Mr. Heckenlively’s ode to autism quackery. Not only is he wasting his money and risking harm to his daughter for no benefit; he’s influencing others to do the same. That’s where my sympathy for him ends.

ADDENDUM: The Bad Science Forum has picked up on this.

Comments

  1. #1 Joseph
    December 26, 2008

    That’s just horrible, and irresponsible. And ludicrous. You know what’s even more horrible? He’s a science teacher.

    About this:

    She usually averaged somewhere between eight and thirteen times the normal amount of aluminum excretion

    Where exactly are the normal reference ranges of aluminum excretion published? (I don’t mean a Doctor’s Data results sheet).

  2. #2 Mariah
    December 26, 2008

    Aren’t there some of these “toxins” they all fear in antibiotics as well? Are they withholding antibiotics from their kids too?

    Why aren’t they screaming about those too? Or maybe they are and I am just lucky enough not to have seen that campaign yet….

  3. #3 MIDawn
    December 26, 2008

    Well, back to autism so, to make sure I’m not confused with antivax Dawn, I’m using the other name.

    Orac, you have broken my heart, writing about this. The poor child. Subject to all kinds of procedures. SPINAL infusion of stem cells? Oh my god. I could just cry, but I’m at work so I don’t dare.

    Excretion of aluminum and mercury – what kind of meds is he giving the child? Ayudarvic ones that are known to have toxic levels? What do you want to bet that some of those “miracle” drugs from the quacks he is giving his daughter have high levels? And when will they learn that chelation challenges are going to have elevated values? Bad science.

    I just hope his daughter lives through all the weird treatments.

  4. #4 Mike
    December 26, 2008

    So damn pitiful.

    Should be a way that child protective services could intervene to prevent continued abuse to his daughter.

  5. #5 jypsy
    December 26, 2008

    Is it the ACE Pathways scam he’s caught up in now? Cherie Peattie has gone from participant to whistle blower. I’ve been following for a while….

  6. #6 notmercury
    December 26, 2008

    Let me see if I have this straight. He criticizes vaccines for not meeting his standards of safety yet he took his daughter to Costa Rica to have stem cells of unknown origin injected directly in to her spinal fluid?!?!?

    I’m speechless.

  7. #7 I am so wise
    December 26, 2008

    Unfortunately, child protective services tend to regard treating kids with quack therapies as “alternative” lifestyles and not to be interfered with.

    Until a kid dies, then the parent/adult that they live with goes to prison.

  8. #8 Ropty
    December 26, 2008

    Yea. This is the reason I try to avoid all discussions of autism.

    How depressing. (And disturbing, for that matter.)

    What can man do against such recklessness?

  9. #9 FreeSpeaker
    December 26, 2008

    The media is begining to pick on the issue of parents who will do anything to “save” their children.

    Last night CBS aired a repeat of an episode entitled “Savant”, about a surgeon who was implanting something into Autistic kids brains, resulting in turning them into savants. The only thing stopping him was the business end of a movieland 9mm.

    http://www.tv.com/eleventh-hour/savant/episode/1225862/summary.html?tag=ep_list;title;5

    I gotta watch this show more.

  10. #10 Mike
    December 26, 2008

    Well, if CPS waits until the kid dies, at least the moron who killed her has documented his crimes very nicely.

  11. #11 SC
    December 26, 2008

    Oh, this poor kid.

    I think a lot of the desperation among these parents stems from a sense of powerlessness and a lack of control. By “studying” the issue, doing all of these tests, putting the child through procedure after procedure, they feel that at least they are actively doing something. And while they’re doing all of this (and afterwards), they have a psyvhological need to justify it as something other than useless – or, worse, harmful or potentially harmful – activity. It’s this need that drives the strong belief in the ideology that surrounds their actions.

  12. #12 Bronze Dog
    December 26, 2008

    I have no words to describe how appalled I am.

  13. #13 Marilyn Mann
    December 26, 2008

    OMG

  14. #14 Regan
    December 26, 2008

    As the parent of an autistic child, I find Mr. Heckenlively’s medical experimentation on his daughter disgusting.

    He’s a science teacher? Good God.

  15. #15 Noadi
    December 26, 2008

    I’m sitting here thinking about how much more useful therapy for his daughter he could have bought with the money he’s spent on quackery. Tutoring and behavior therapy can really help, it’s slow and hard work for the kid and parents but it actually works. However it requires admitting you can’t cure the child only help them cope with autism better.

  16. #16 G. Broaddus
    December 26, 2008

    I seriously can’t fathom that sort of desperation. My oldest son was recently diagnosed with autism, and while I was less than happy about the news (although I basically suspected that he would get that diagnosis; he’s been almost entirely non-verbal for 18 months or so, and he’s almost 3), I have never been so desperate as to seek a cure for him. Granted, I have been following the vaccine-autism controversy since before he was born (and have always thought the mercury hypothesis ridiculous), so I have had information on my side, but I am so amazed at how many people consider autism to be such a heinous tragedy. I would not risk the way my son is now in any of the way Heckenlively has for the slim – no, virtually nonexistent – hope of his improvement from them.

    Right on for bringing this out, Orac. More attention needs to be given to the desperation that drives these movements and the need for more and better education about the science behind these issues.

  17. #17 JKW
    December 26, 2008

    One can only hope that he’s actually, and inadvertently, scaring away more people than he’s motivating to recklessly experiment on a child. He is treating his daughter with no more respect than a young boy does a fly as he pulls off its wings.

  18. #18 Azkyroth
    December 26, 2008

    Someone explain to him that what he’s doing is like trying to turn a Mac into a PC by repeated disk defragmenting. Maybe that’ll get it across.

  19. #19 Lurkbot
    December 26, 2008

    I’m sorry I have nothing scientific to contribute to this discussion, and I’m pretty new to this whole controversy. My first exposure to it was on Fox Noise, and I thought to myself: “Self, if Joe Scarborough is agreeing with RFK, Jr. about anything, I smell a rat!”

    My question on the subject of this particular thread is, are there really people who are offering “cures” for autism? Yes, some people’s brains are wired differently from most of us; it may be genetic, it may be from intrauterine insults, it may be environmental. Suppose for a moment vaccines can cause it, Hell: suppose it’s all caused by vaccines, how can anyone imagine it can be reversed after the fact?

    As I say, I’m new to some of the woo being peddled out there, and this blog has been a real eye-opener: thanks, Orac! While we’re on the subject, are there people offering to cure Down’s Syndrome by making that pesky extra chromosome go away?

    Anyway, as Noadi said, tutoring and behavioral therapy can help and would be a lot less expensive and dangerous than some of Heckenlively’s witch-doctoring. It’s treating the symptoms, yes, but it’s the symptoms that are causing the problem.

    Or, to quote Arthur Carlson on WKRP:

    I don’t know how many times my mother has said to me: “The least you can do is try to act normal!

  20. #20 Rogue Epidemiologist
    December 26, 2008

    So Heckenlively thinks he can change the cellular energy pathway (wtf?) by zapping his kid with UV light??? Great! Then he’s going to have a kid with crazy skin cancer who remains just as autistic as she was before this all started.

    I wonder at what age will the kids recognize they’re being used as lab rats? And when are they going to finally say, “Mom and dad, knock this shit off and leave me alone!”

  21. #21 sophia8
    December 26, 2008

    First, it’s the mercury; then it’s the aluminum. Then it’s “viruses”. Then it’s some general “toxin swamp”. When is he going to decide that demonic possession is the cause of his child’s problems? After all, he must be getting close to the limit of ‘chemical poisons’ he can blame.
    This awful story shows how there really isn’t much difference between the Mercury Militia and religious fundies when it comes to ideas of how children should be; if your child isn’t perfect, then blame the Devil/toxins and beat/chelate the evil out of her.

  22. #22 Kev
    December 26, 2008

    Heckenlively describes himself as a ‘beloved science teacher’. Beloved by who exactly?

    Doctors Data came under direct fire from the very reputable Dr Jeffrey Brent in the latest round of the Autism Omnibus hearings. Here’s the relevant quote from his testimony:

    …I have seen a number of patients now come to me because of these ‘doctor’s data’ type of laboratories which are based on urines – chelated urines – and they always have high leads in their chelated urines and I tell them ‘well, lets just do the gold standard test, lets get a blood/lead level and so far, 100% of the time they’ve been normal.

  23. #23 storkdok
    December 26, 2008

    I have a child with autism. I consider this is child abuse. This is one of the most egregious stories I have read.

    I want to thank you and your fellow evidence based bloggers for exposing this and other quackery perpetrated against autistic children. Please keep blogging and exposing the quackery for all of our children’s sakes.

  24. #24 Who Cares
    December 26, 2008

    @Rogue Epidemiologist:
    It depends on the severity and form of autism.
    If she has a fairly mild form of what these days is classed as high functioning or Asperger then there is a good chance of that happening.
    However this kid seems to have a more severe form of above mentioned or down the scale to classic autism.

    That said can someone charge the father with reckless endangerment or manslaughter for sticking an IV of unknown cells past the brains defensive barrier?

  25. #25 Liz Ditz
    December 26, 2008

    BTW, Heckenlively isn’t a science teacher, he’s an attorney.

    Dear Orac,

    Thanks for tackling the burblings of Heckenlively with your usual vigor and of course Respectful Insolenceā„¢.

    I was just too sad for his poor little daughter, poked with needles and shlepped hither and yon for outright quackery.

    I hope she has a really good school program.

  26. #26 FreeSpeaker
    December 26, 2008

    Charge his DAN! doctor for failure to report child abuse. A few of these and the DANites will be gove.

  27. #27 Anne
    December 27, 2008

    “Aren’t there some of these “toxins” they all fear in antibiotics as well? Are they withholding antibiotics from their kids too?”

    Apparently, yes. Meet Daniel and Ruth Faiella, who have taken their autistic child to Costa Rica three times for stem cell treatment. They write that Heckenlively is doing the stem cell thing all wrong by being impatient and using other treatments that might kill off the stem cells. “Adult Stem Cell treatment is not an injection today and cure tomorrow,” they say, “it is real science and it works, BUT it takes time.”

    As for antibiotics, they are apparently “fungal toxins” that should be avoided. The Faiellas claim to substitute colloidal silver for antibiotics. According to them, colloidal silver is effective against viruses, which are actually bacteria. “[V]iruses that cause disease do not exist. The claim that there are viruses that cause disease is a fairy tale, like the Tooth Fairy and Santa Clause.”

    Anyway, I’m wondering if the Faiellas and Heckenlively had to sign a release of liability to get those stem cell treatments at “10′s of thousands of dollars” a pop.

  28. #28 Richard Eis
    December 27, 2008

    What is even worse is I put a pretty harmless comment up saying basically “thanks for the warning that stem cell stuff doesn’t work”.

    Even that comment wasn’t published. Only gratuitous fawning allowed. No dissent. If people are using that site as a major reference for autism then it’s no surprise these poor families are doing this stuff given their methods. Really it’s bordering on being a cult.

  29. #29 jypsy
    December 27, 2008

    My link to Cherie Peattie’s blog also wasn’t allowed. Contrary to what participants were told, “ACEPathway.ca is not a clinical trial registered with Health Canada nor are they affiliated with the FDA in the United States either. Both agencies have confirmed this”. Why would AoA withhold that kind of info from its readers?

  30. #30 Cherie Autism ~ Mom
    December 27, 2008

    Hello everyone…

    I am Cherie Autism Mom… the same mom Cherie Peattie who walked away from ACE Pathways Investigational Study for all of the harm it has caused my child and so many others.

    I also saw this new [posting on AOA and was I was literally dumbfounded to see that they were actually endorsing an illegal study.

    Perhaps you are unaware that several children have had mild to serious side effects from the study that they are so liberally endorsing.

    My child is one of the severe cases and even 2 months after, my child is still suffering. In fact we are now dealing with seizures; something my child has never had to deal with before.

    Although I am very happy for his child, I am also very concerned that between reading AOA and the ACE Pathway site that their seems to more of a political debate rather than seeing concrete proof that these children have benefited and that “charge” has actually been sustained.

    I have done my own research and this study is not approved by the FDA or Health Canada. In fact ACE Pathways Investigational Study has lied about the FDA & Health Canada approving and actively monitoring this study. I have read their claims on the site and even on packaging that I have been sent. I have been in contact with the FDA & Health Canada and they are both repeating the same thing, “This study is NOT approved”!

    These children who have failed with ACE Pathways treatments have been dealing with regression, seizures, auditory over stimulation, serious self harm, losing the ability to walk, regression with speech, night terrors… the list continues.

    Both are actively investigating this study and it has been shut down so far by Health Canada.

    Although the legal editor from AOA has a child that is doing well now, I have read some of his own reports about expired products, EH 101 and even his own reactions to this treatment.

    One day he is reporting negative side effects and now I am seeing positive.

    What is the actual story here?

    If anyone thinks that these studies are safe and approved, then please contact your FDA and ask, or Health Canada if you are resident there.

    I am sure your findings will be as shocking as mine.

    It cannot be denied; children have suffered terribly from the exact same treatment they are suggesting others seek out.

    I assumed that AOA was a site to educate and provide information to those dealing with and affected by Autism, not a site that would actually allow an illegal study to be endorsed.

    I truly do not know who to be more shocked with!

    The study or the lawyer endorsing it!

  31. #31 alyric
    December 27, 2008

    If you think heckenlively’s narrative’s a fright, you should try Stan Kurtz’s chapter in Jenny McCarthy’s latest book. Ii think it’s actually worse. Our Stan searches out new treatments that might head to recovery every conference he goes to, which is where he discovered valtrex for viral infestations. His narrative describing his son’s ‘herxheimer’ reaction to valtrex over 21 days has to be read to be believed and it’s all down in black and white in a best sellin novel no less. Something very off with these people and cult seems the best descriptor as somebody up thread has noted.

  32. #32 jypsy
    December 28, 2008

    Cherie, you must be getting more and more sickened watching the comments unfold over at AoA

  33. #34 BTDT
    December 28, 2008

    Many people talk about the tragedy of autism. I am the parent of a severely autistic child, and I know that autism itself is not a tragedy. The tragedy is the despair of parents that leads them to try dangerous, and/or ridiculously expensive treatments that lead to bankruptcy for many families.

    I hope that more parents, like Cherie and myself, who have tried some of these treatments and realized that our children were not helped, and even harmed, will speak up. Unfortunately, once parents reach that point of realization they drop out of the autism treatment discussions, so that the “newbies” never hear the downside.

  34. #35 alyric
    December 28, 2008

    Thanks for the link, jypsy. These people play very dirty – very nasty attack on Cherie in their ‘rebuttal’, no doubt mostly invented and not a single word about this being a bogus clinical trial. How low can AoA go?

  35. #36 Daniel Faiella
    December 28, 2008

    Thank you for telling other parents about Ace pathways study, I am so glad I never tried it and I will warn others now.

    I know the Posted by: Anne | December 27, 2008 1:30 PM

    said a comment about my family but I don’t mind. Thank you all again for warning on Ace Pathways!!!

  36. #37 Cherie Autism ~ Mom
    December 28, 2008

    The postings do disgusts me; however, I have made every attempt to post the blogs I can to inform others. If they still choose to ignore the warnings, then my prayers go out to them. There is no one to help these children when they do fail. It is just scary no matter how you view it.

    I have posted the slanderous notes about me and others who have walked away from ACE Pathways after their children regressed or when they decided the study was not for them. One blog has all of the links to the various Canadian and USA agencies that have been contacted or who others should be contacted to prove that this study is not legal.

    http://cherieautismmom.blogspot.com/

  37. #38 Cherie Autism ~ Mom
    December 28, 2008

    An important letter…

    A parent from Canada received the following letter from the ACE Pathways Investigational Study Administrator.

    I think it is important to note, that they have made reference to the study being unauthorized and have requested that all materials be returned, without a REFUND being offered!

    “ACE Pathway Investigational Study
    P.O. Box 3681
    Fredericton, NB E3A 5L7

    December/2008

    Re: UNAUTHORIZED CLINICAL TRIAL IN CANADA

    We have been informed by Health Canada to discontinue the clinical trial in Canada and to request return of any remaining components, including the light bulb, spray and dye. Please stop treatment immediately and return any unused components to Post Office Box 3681, Fredericton, NB E3A 5L7

    Please feel free to communicate with your physician any concerns that you may have regarding the trial in relationship to your child’s health. Your physician may wish to contact Dr. Martin @ (626) 616-2868.

    Thank you for your cooperation and understanding.

    Sincerely,

    BJ McKelvie

  38. #39 DJ
    December 28, 2008

    Thank you for posting this example of the harm that people do to their children because they are so misled. People really need to see what kind of harm they are doing. What makes this worse is that so many support this type of unethical behaviour.

  39. #40 Bobington
    December 28, 2008

    Is it possible to report Mr. Heckenlively to Children’s Protective Services; this is patent child abuse

  40. #41 Cherie Autism ~ Mom
    December 28, 2008

    I would never want anyone to take it that far. I think the legal editor is doing exactly what he needs to to help his daughter at this time. If it is working for her, and she is not having negative side effects, then that is great; however, in doing so I just wish that his articles also relayed the other half of the story. That people must proceed with caution and understand that even he has not had a perfect journey through ACE Pathways.

    Although their are a few brief glimmers of this on his parents progress diaries, there are none in his article on AOA.

    My largest concern is that this study is not approved. It has been conducted illegally and the ACE Pathway doctor / administrator have lied to current, past and present participants about the FDA & Health Canada involvement.

    I just want the correct information there. I’d also love to see the doctor and the administrator stop the BS, defamation of character and slander against myself and everyone else. I know this will not happen because they are so adamant to protect this study… but at the expense of who? Our children. That is what I hate. The deceit, the ignored children, the slander, using our children as guinea pigs, lying to obtain data.

    It is all so sickening…

  41. #42 dt
    December 29, 2008
  42. #43 axiom
    December 30, 2008

    So why have autism rates risen so dramatically ?

  43. “BTW, Heckenlively isn’t a science teacher, he’s an attorney.”

    So, for someone who has knowledge of law, he doesn’t seem to understand the notion of child endangerment… which he SHOULD do!

    Sad and pathetic.

  44. #46 shyloh.jacobs
    February 22, 2011

    Thank you for this post and all your comments! I was just talking with my Jacksonville employment lawyer and he said that he has experienced this. Then, the thought occurred to me that my friend’s little brother shows all of these signs and his parents don’t do anything about his self-harm and just blame it on his autism and let him beat his head in the wall! I am going to look into this further, thank you again.