The price of anti-vaccine fanaticism, part 3

Jake’s hit pieces against Seed and me reminded me of something. They reminded me of just what it is that the anti-vaccine movement promotes, and the damage that I wish Jake would wake up and realize that the organization he has associated himself with causes a great deal of harm. Part of that harm derives from its antivaccine activities, which are custom-designed to discourage parents from vaccinating with unfounded fears of vaccines causing autism. However, there is another harm that the “vaccines cause autism” movement causes that is not related to the promotion of infectious disease that results from decreasing herd immunity. Rather, it is the harm that results from the promotion of “biomedical treatments” (a.k.a. quackery) to try to “cure” autistic children.

I’ve written about such examples before. For instance, there was Tariq Abubakar Nadama, who died at the hands of a quack named Dr. Roy Kerry. The description of how his quackery and incompetence resulted in a “clean kill” of a five year old child is chilling indeed to behold. But that’s just one example. Another chilling example is the online account of what Kent Heckenlively does to try to “cure” his daughter of autism. Not only does he subject her to all manner of blood and urine tests for various “heavy metals” and “toxins”; flit from quackery to quackery; and posting it all on Age of Autism. Perhaps the most horrific example came when Heckenlively described hitting his father up for $15,000 to travel to Costa Rica to have some quack inject “stem cells” into her cerebrospinal fluid.

Now, a guest blogger over at Autism Blog tells of another example:

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.

Here is what Saul has been treated with between the ages of 3 and 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

This all comes at a cost. For instance, in one message Mary listed the monthly cost: $2,800 to $3,500 for IVIG, $500 for supplements and chelation therapy. But that’s just money. It’s always possible to get more money, even after pissing 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 benefit. Indeed, Mary even recognized it:

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,” while the post above by Mary is the chant, much diminished, of a woman who has been at it for years and is tired but can’t face that all the expense and pain inflicted on her child have garnered no benefit. It’s the contrast between the new and chipper versus the weary and jaded.

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.

The warm, cozy, “nurturing” atmosphere, where never is heard a skeptical word, also explains a lot about the reactions of people like Jake. They believe so deeply because they’ve never been exposed to data or criticisms that contradict their world view. Not surprisingly, like Jake, 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, I can see just how such parents can make autistic children pay the price of their delusions.