Truth and Consequences – The Anti-Vaccination Movement Exacts a Price

23 Sep

“I feel like getting in my car, driving away and never coming back. I can’t stand it anymore. If the screaming, howling, humming, and screeching doesn’t stop I will lose my mind. 14 hours a day. From the second he open his eyes until the second he closes them there is noise. Even if you tell him to be quiet he sits there and says “be quiet…be quiet” over and over. Not more than 10 seconds goes by where some ridiculous sound isn’t coming out of my son. He talks in a high pitched screechy voice that makes every nerve ending stand on end. He screeches and screams for no reason. The humming, the high pitched humming all day long. I can’t take it. My head hurts so bad and there are only so many things I can take for a headache. I wake up at 7 am, or rather I am awakened by screeching at 7am and get no peace until about 9pm. By then my head hurts so much it doesn’t matter. I can’t get anything done because I can’t focus with the noise in the background. I can’t have a phone call. I can’t have a conversation in person. I know this is going to upset some people but I swear, I miss the days when he didn’t make a peep. not a single peep. I remember when I used to cry and ask him to talk to me, to say anything. I should have been more specific and wished he’d speak and make meaningful sentances rather than walk around all day and say meaningless phrases over and over, and scream and screech when he didn’t. know what meaningless phrase to use at the moment. I have about 40 minutes before he goes to bed then I get to listen to him hum himself to sleep for an hour. By then I should be ready to jump off a roof.

Thanks for letting me vent. Not sure if it made me feel better but at least if I jump off the roof someone knows why”

Posted by “Mary”, mother of “Saul”, age 7.9 (7 years, 9 months), to an autism “biomedical treatment” yahoo group in August 2009.

The idea that vaccines might be a cause of autism has received a great deal of attention from the media. Scientifically, the question has been thoroughly investigated and thoroughly discredited.

Legally, the idea has also been rejected. The Autism Omnibus case bundled the claims of almost 5000 children against the Vaccine Injury Compensation program. In the hearings for the first of three theories of causation, the lawyers for the parents and their children chose the strongest three cases to illustrate their claim that MMR vaccines and thimerosal-containing vaccines can combine to cause autism. On February 12, 2009, all three cases were dismissed. The decisions were scathing, stating that “the overall weight of the evidence is overwhelmingly contrary to the petitioners’ causation theories.” Moreover, parents were characterized as a “loving, caring, and courageous” family “misled by physicians who are guilty of gross medical misjudgment. In June and July of 2009, all test cases were appealed, and all three were dismissed.

The yahoo group “Environment of Harm” formerly “Evidence of Harm”, was established to discuss the book of the latter title, written by journalist David Kirby. The focus of the group is to discuss

“issues of government public health negligence and corruption and the various political efforts by parents to end the spectrum of epidemics that is being revealed as mercury poisoning, especially autism.”

From March 2005, the date of the book’s publication, until February 2009, when the Omnibus legal decisions were rendered, the group received an average of over 2000 posts per month. Since the rulings, the posting rate has dropped to only 800 per month, perhaps indicating that the issue is also losing momentum from a political point of view.

The mainstream media, the groups such as the AAP, and the blog sphere have also pushed back in an effort to educate the public on the harm done by the vaccines cause autism groups.

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.

We first meet Mary in October 2003, when her son Saul (born November 2001) was only 22 months of age. She began posting on the group NLT (for a description of the yahoo groups discussed in this article see the section at the end). She stated that her son

“is basically non verbal. He said his first word, duck, at 7 months old. About a month later he said light, off , and on, but dropped duck. This set a pattern for him. Anytime he learned a new word he dropped any old words he had used at that point. Now, his only real words are Mama and Dada. He will on a rare occassion say car. He has had and lost about 20 words since 7 months of age.”

Shortly thereafter, he was evaluated by early intervention, and psychologist wrote PDD on his evaluations, along with the term Autistic-like. Mary was told that he was not autistic, but he’s autistic like. 10-20 hours a week of intensive in home therapy (ABA) was recommended.

So, Saul is a very young child, showing speech delay and signs of autism, evaluated very quickly, and almost immediately started on early intervention. Of course, Mary is understandably upset:

“I don’t know why I’m so upset. He (the psychologist) didn’t say anything I didn’t already know or suspect. I guess its just because my fears were realized. Rather than come in and say “oh no, he’s fine, he’s just a late talker” I heard what I was hoping not too. I’m sure that somehow to some degree this is my fault. Saul was such a quiet content infant, and he was content to play by himself as he got older I sort of went with it. I figured he was happy let me go do dishes, or laundry or whatever and let him entertain himself. Yeah that was great but now he is only happy by himself and turns in to himself and its my fault I know it is.”

Recent research (two links:here and here) has looked at the impact of parental acceptance of their child’s autism diagnosis. It was found that parents who do not come to a resolution (i.e. come to terms with and accept the diagnosis and its implications) find raising their child more difficult. In the case of Mary, we will see a real-life example of a mother failing to come to terms with her child’s PDD.

Here’s Mary again:

Thank you everyone for your support. I’m sorry I forgot to mention Saul’s age. He will be 2 at the end of the month.

I’m feeling a lot better but still overwhelmed. I want to read as much as possible so I can do the best to help him but I think I need a little time to come to terms.

A few questions though if anyone knows…Do kids diagnosed with PDD always end up as special ed or is their hope with therapy he main go mainstream. The reason I ask is that my cousin teaches 5th grade special d and the majority of her kids are PDD kids, and have been in special ed since kindergarten. What are the odds that my child will grow up, go to college and lead what is considered a normal life?

Also, I was reading about a special diet that gluten free that is supposedly helpful. Has anyone tried this?

Should I just go with the system for say 6 mos or so and see how he responds and progresses before trying anything different like diet changes or supplements.

Sorry if I’m asking a million questions. My brain is spinning and all the websites I go to just overwhelm me more. Everyone here seems to have such a wealth of knowledge, and more importantly personal experience and understanding.”

This message signals the start of a frightening journey into the realms of woo. The “treatments” inflicted on Saul are very painful to read. Mary joined numerous autism “biomedical treatment” yahoo groups. She is presently a member of all the groups in the box, see below (except EoH), and more besides. She has posted more than 3500 messages to these groups. Mary reveals her willingness to accept medical advice from strangers on the internet, and her trust in doctors employing “gross medical misjudgment”. Between the ages of 3.6 and 7.9, Saul has been “treated” with the following (in alphabetical order):

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

Mary has been tireless in “treating” Saul. But what about Saul? One would think that he must be very impacted by autism in order for her to go to these extraordinary lengths to cure him. Actually, no. He’s an extraordinary kid, and a wonderful one. Saul could identify all of the letters in any order and count to 40 at age 2.2. He started sight reading words at about 2.3 and at age 2.8 could sight read about 30 words. He started kindergarten in a segregated setting at age 4.9, , talked to the teacher, “he sat nicely through circle time, sat at his desk during class, and even raised his hand and answered questions. He was pointing to shapes on the wall and quizzing the teachers!” Here is Mary’s description of Saul at age 4.7:

“I woke up this morning and he was in bed with me. I’m not sure what time he came in because I never heard or felt him get into bed which is unusual. I woke up and felt him there. I rolled over and his little face was right there. He looked so peaceful and really has the face of an angel. I just laid there and stared at him for about 20 minutes. He yawned and opened his eyes. He saw me and his face lit up with a HUGE ear to ear grin. “Good morning Mom. Love you. Gimme a hug.” He gave me such a big strong hug. “Gimme a kiss.” I gave him a kiss. A second later his gears kicked in and he was off and running on full speed. After a few minutes he came back in the room and said “GIMME BREAKFAST! ! !””

But the “biomedical treatments” have not always been kind to Saul. Here’s Mary describing him at age 5.11

My son is on a ton of supplements. We haven’t really changed anything. Starting August 30, for three weeks we had to stop all enzymes, antifungals and probiotics in preparation for a endoscopy/colonoscopy. He is back on everything since he was scoped on Sept 20. Also at the beginning of August he had a high fever and a nasty rash that was diagnosed as Fifth’s Disease. I’m not convinced it was Fifths. He didn’t have the bright red cheeks and the rash was gone in 3 days.

After being sick he became clingy and a little whiny. In the past month its become horrible. I can’t even stand up without his whining “mommy..moooommmmmy, mommy will come.” I hear this the entire time I’m out of the room. Even if I tell him what I’m going to do and that I’ll be right back he continues saying it over and over. He whines over every little thing. Usually just lets out a big “WWWAAAAHHH” and it goes on and on. He cries over everything. He’s driving me insane. We are also seeing a decrease in spontaneous expressive language, asking repetitive questions, and repeating back questions instead of answering them.”

Nor have the “biomedical treatments” been kind to the family budget. In one message, Mary admitted that each month she spent $2800 – $3500 for IVIG, plus about $500 in supplements including the cost of chelation.

In a rare moment of insight, in May 2008, Mary posted:

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

Finally, a year later, she posted the preamble to this article (see box at top). How’s that “biomedical treatment” working out for you, Mary?

Such are the real costs of the anti-vaccination movement, the “biomedical treatment” internet groups. And the real costs of a parent unable to accept their child’s diagnosis. In her last message to the NLT group, Mary is still in denial about her son’s diagnosis:

RE: Sowell Traits
My son is 5 and is diagnosed PDD-NOS fits 7 of these to a T! ! ! The only one that doesn’t fit is # 7

Makes me wonder what we are really dealing with.”

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.

Some Yahoogroups

A-M – Autism-Mercury. Membership 8400, 2000 messages/month (archives public)

“To discuss current issues related to the increasing incidence of autism the potential link between excessive mercury exposure via thimerosal in infant vaccines. Topics include: mercury detoxification (“chelation”), mercury-related issues/news, and vaccination-related issues/news. Most members are parents of children with autism, aspergers, ADD, ADHD, PDD, PDD-NOS, SID, oppositional defiance disorder, apraxia, speech disorders, and/or other related symptoms. There are many labels: you are welcome regardless of particular label(s). In addition to mercury, we also discuss other heavy metals (for example: arsenic, antimony, lead). Many parents here are in the process of chelation, with a child. This process is discussed in detail. Also welcome: mercury poisoned adults; other disorders/issues related to mercury poisoning; other biomedical treatments for ASD.”

Comment: Primarily discusses Andrew Cutler heavy metal chelation protocol. This protocol relies on faux “counting rules” applied to hair testing to purportedly prove that people are “mercury toxic”. Andrew Cutler has a PhD in Chemical Engineering.

CK2 – Chelatingkids2. Membership 6600, 3000 messages/month

“This list is for parents and/or family members of children with autism who are seeking biomedical intervention, The main focus of treatment here follows the DAN! or Defeat Autism Now.”

Comment: Mercury chelation according to the DAN! protocol. This protocol relies on provoked urine tests to purportedly prove “mecury toxcicity”. This very active group has been recently closed to new postings for an unspecified period of time.

EoH – Environment of Harmformerly Evidence of Harm. Membership 2300, 600 messages/month (archives public)

“This is the Environment of Harm discussion list focusing on vaccine damage and mercury poisoning as it relates to autism. Of keen interest to participants are the issues of government public health negligence and corruption and the various political efforts by parents to end the spectrum of epidemics that is being revealed as mercury poisoning, especially autism.”

Comment: Politically active group originally supporting the autism is caused by mercury poisoning hypothesis, but now openly anti-vaccine.

GFCFKids– Membership 14000, 3500 posts/month

“The principle aim of this list is to provide a discussion forum for parents of children on the autism spectrum who are avoiding gluten and casein and other substances in their children’s diets. We hope that the discussions will include practical information and tips on following a GFCF(etc) diet; scientific research and opinion; the latest developments in understanding GFCF(etc) diet-related health problems; your personal stories and experiences with relation to GFCF(etc) problems; information on what food is GFCF(etc)and what is not; tips on how to eat out of the house; recipes and tips on how to cook and prepare GFCF(etc) food; what vitamins, minerals, herbs and other supplements may be appropriate for a child with autism, how to cope with difficult diet demands, plus support for parents.”

Comment: One of the largest “biomedical treatment” yahoo groups. While the GFCF diet has substantial anecdotal support, clinical trials have not shown any benefit. The GFCF diet appears relatively harmless, however, it can result in weakening of bones due to nutritional deficiencies. Moreover, it often acts as a first step on the path to more dangerous “biomedical treatments”.

NLT – NaturalLateTalkers. Membership 2900, 500 messages/month

“This list is a support for parents of latetalkers or speech delay with some or all traits of latetalker listed in the book Late Talking Children by Thomas Sowell. . . Here parents ARE and will be able to discuss their problems, concerns, and dissatisfaction with the over diagnosing done by various systems, such as speech therapists, doctors, schools, etc. Parent’s choice helping with speech through parent or another source is to be respected.” (sic)

Comment: This list supports those in deep denial about their child’s autism. While such support groups appear to be relatively benign, offering mutual support to parents of children with disabilities, they are often an entry point for parents to learn about the autism “biomedical treatment” and anti-vaccination movements. These groups are replete with examples of parents taking medical advice from strangers over the internet, many of whom are accorded more credibility than the medical professionals who have actually seen their children.

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507 Responses to “Truth and Consequences – The Anti-Vaccination Movement Exacts a Price”

  1. Guest Blogger October 14, 2009 at 02:49 #

    To the moderators of the NLT group, posting here under various ‘nyms:

    As you well know, discussion of “biomedical treatments” were not always banned on the group. A simple use of the search function reveals

    GFCF – 178 posts
    DMG – 308 posts
    chelation – 190 posts.

    The last search is revealing. Many the recent posts containing this word are “file” postings, warning that there is no scientific evidence to support chelation for late talking. Thank you to the moderators for taking this stance. However, this rule was laid down on October 21, 2006, where “Ongoing posts that continue to discuss controversial, unproven methods or “unproven
    causes of late talking” will not be tolerated. This includes: vaccines, chelation, and any posts with obvious “agendas” to promote unproven methodologies or with political agendas.”

    Prior to that date, there WAS active discussion of “biomedical treatments” for late talking, including chelation, hair tests, and discussion of vaccines as a cause of late talking on NLT. Since the group has existed since April 2001, it has tolerated these discussions for the majority of its existence. In particular, these discussions were continuing when Mary was an active member of the list.

    I’d also like to ask you fine ladies of NLT, where exactly is even one example of me “telling falsehoods about other points”? Oh, let me guess, maybe it’s my opinion about NLT as expresed: “Comment: This list supports those in deep denial about their child’s autism.”

  2. Guest Blogger October 14, 2009 at 03:01 #

    pD, you are quite right, I wrote the phrase – How’s that “biomedical treatment” working out for you, Mary?”

    And just to be totally honest, I do regret writing that – it added a tone of gloating to the post, which was not my intention. Believe me, gloating was the last thing on my mind. I feel sorry for Saul in particular. But I also feel sorry for Mary, who I see as a very well-intentioned parent who has been caught up in the group think of the yahoo group. These groups encourage parents to keep trying one thing after another, keep trying longer, and to keep trying more and more extreme treatments. Mary is a victim as well. The real bad guys in this sorry tale are the guys making the money off Mary, and inflicting fear and pain upon Saul.

  3. A quick note by another guest October 14, 2009 at 03:54 #

    As we can see, there is stalking going on.
    And misreporting.

  4. A quick note by another guest October 14, 2009 at 04:02 #

    This so called “guest blogger” really is such a classic troll.
    The same individual would whine and complain if there was too much moderating- trolls take any stance there is just to be annoying.
    Questions do come up on lists and things are handled as they come up. Everyone knows this on discussion lists.
    Misreporting and lies are part of trolls and internet stalkers methods and this proves it.
    If anyone will notice – this troll wormed its way back onto a list they were likely thrown off originally.
    It is clear they are on there to stalk individuals – why would anyone let someone like this remain on a private list?
    It is an obvious case of deception

    Prior to that date, there WAS active discussion of “biomedical treatments” for late talking, including chelation, hair tests, and discussion of vaccines as a cause of late talking on NLT. Since

  5. Chris October 14, 2009 at 04:30 #

    Dear “A quick note by another guest”, please read this summation of federal court testimony: http://neurodiversity.com/weblog/article/184/ . Then tell me exactly why you would defend the medical experimentation on that child. You will note that the testimony shows he did suffer from those treatments.

    Explain again why you are defending people who do that to children.

    As far as “trolls” go, I am pretty sure you are posting under several names, and making spurious statements: the very definition of troll.

  6. Chris October 14, 2009 at 05:06 #

    I assume you are from NLT, and if your children really are “Natural Late Talkers” you would not really need to pour chemicals in your children.

    As I said before, my younger son was a late talker. His delay in language was noticed by my older son’s speech therapist (my older son was diagnosed with childhood apraxia of speech, which is completely different). In one summer of speech/language therapy my younger son gained almost a year of vocabulary. No drugs required.

    That is a natural late talker.

    What advice so you give to parents whose children are like my older son: children with speech disorders that do not get better on their own, or need the at least ten years of speech therapy? Or to parents whose kids actually are autistic?

    Do you tell them to wait and see?

    And if you really do discourage the bio-med stuff (and it looks like you don’t), why, oh, why would you defend this kind of treatment of a child (from the federal court testimony of the link I posted before):

    Dr. McCabe testified no good data demonstrates that chelation therapy works to treat autism. Nevertheless, approximately 30-40% of Dr. Bradstreet’s patients were chelated during his treatment of them, a figure that remained consistent over the five years preceding the hearing. …… In spite of the fact that none of C.’s tests for mercury was high, and C. responded poorly to chelation, Dr. Bradstreet ordered numerous rounds of chelation therapy.

    That is child experimentation and torture. There is no defense for that. Also, that is publicly available testimony, open for all to see.

    Tell us exactly why that is okay dokay. Okay?

  7. A quick note by another guest October 14, 2009 at 06:14 #

    If you read my post, you would know I was not defending anyone like that.
    It is interesting that you keep insisting on it.
    As far as trolls go, one of the descriptions of trolls is insisting on a point that was already made and cleared up countless times.I think it is quite clear here who really is posting under different identities.

  8. passionlessDrone October 14, 2009 at 13:35 #

    Hi Guest Blogger -

    Nicely done. We are a community with more than enough pain, even if some of it is self induced, expression of understanding and sympathy are always appreciated.

    For the record, I think that many of the treatments that Mary has tried on her son have fundamentally sound scientific rationale, while others don’t, and indeed, a few strike me as poorly thought out experimentation.

    - pD

  9. Chris October 14, 2009 at 15:23 #

    pD:

    For the record, I think that many of the treatments that Mary has tried on her son have fundamentally sound scientific rationale, while others don’t, and indeed, a few strike me as poorly thought out experimentation.

    Like the chelation?

    So called “guest”, you have a bee in your bonnet. If you do not support the medical experimentation on children, you should not be worried about the posts from NLT. It seems most of the medical experimentation (like chelation) is being discussed on the Autism-Mercury Yahoo board, which is public.

    It has also been discussed on the Age of Autism website, and in federal court.

    Now stop derailing the discussion to your own petty issues with the NLT board.

  10. Guest Blogger October 14, 2009 at 16:40 #

    They are a sensitive bunch on NLT. The archives of the group have been deleted. I guess that the moderators couldn’t stand any exposure of the group to the light of day.

  11. passionlessDrone October 14, 2009 at 17:30 #

    Hi Chris –

    Chelation is a difficult one. Obviously, these children have problems processing metals, as Sullivan and I discussed on a separate post on this board, here.

    I know about ten families who do biomed, and none of them have been as aggressive with the chelation, not even close, as Mary was (or at least, as aggressive as posited by Guest Blogger). I personally don’t think that metals cause autism, but do think that there is evidence from multiple avenues that having autism means you are more likely to have problems with metals. If you are holding onto them, the question becomes is it valid to try to bring them out, given the unknown nature of what is going on there? The other very unfortunate refrain in this type of discussion is the inability to decouple thimerosal from a more generalized problem of metal retention.

    Also, the OSR is pretty scary stuff. I’ve recommended to one family that they stay away from it.

    Pioglitazone has some very creepy possible side effects and I guess it would depend on the child’s diagnostic profile and ability to communicate as towards a decision there. There is / was a large scale trial on this underway at one point; a small trial of it seemed to show improvements. The study design can be argued with some validity, but the desired effects of pioglitazone, a reduction in inflammation have scientific rationale. It’s the other stuff that gets in the way that is scary to me.

    The galantamine is one we tried, but it upset my sons stomach and we haven’t been back to that class of drug. But there are many studies using a variety of similar drugs that have larger scale trials in neurodegenrative diseases with targets that have parallels in autism. There are also small scale trials of galantamine and similar drugs in children with autism that show improvements, again, however, suffering from pilot study designs.

    Other than that I see tons of things trying to address gastro function; again without knowing the specifics of the child, it is difficult to know how appropriate these might have been. See my response to Sullivan above concerning my own experiences with anti fungal agents.

    There are also a lot of supplements. Many of them I think have some level of rationale, i.e., clinical studies showing deficiencies in either the vitamin, or metabolic process. A few have limited trial support with varying methodological problems / strengths. Again, unfortunately, we have no way of knowing what diagnostic tests were run on Saul, information which would provide good information as towards if these supplements made sense or not.

    For example, as I discussed previously with Sullivan in another thread, my son’s zinc / copper ratio was found to be very skewed via LabCorp testing. Our DAN at the time recommended zinc supplementation; we commenced and noticed some old maids tale style improvements in his physical status and behaviors, i.e., no more half moon circles under his fingertips and a drastic reduction in nail biting. Subsequent testing revealed that his zinc levels were increased, though still at the low end of normal.

    Was this experimentation? I don’t know; but I do know that three years later, a study from Pittsburg found the same thing in children with autism, skewed copper to zinc ratios. So either my DAN doctor made a wild unsupported guess on our second visit, or, alternatively, she had actually run enough blood tests on children with autism to identify that indeed, zinc and copper ratios were imbalanced.

    Does that help?

    - pD

  12. Joseph October 14, 2009 at 17:59 #

    I personally don’t think that metals cause autism, but do think that there is evidence from multiple avenues that having autism means you are more likely to have problems with metals.

    After controlling for diet, urbanicity (and maybe pica)? Truth is there’s not a single one.

  13. Prometheus October 14, 2009 at 18:59 #

    pD,

    You’re correct – I misread the sentence.

    Prometheus

  14. dr treg October 14, 2009 at 19:51 #

    It may not be the intake or excretion of metals that is important in autism, but the metal in metalloproteases which are involved in and influence the immunogenic response within the brain in autism.
    Metalloproteases (MMPs)are zinc dependent endopeptidases. MMMPs degrade extra-cellular proteins and activate or inactivate cytokines amongst other actions including morphogenesis and angiogenesis.
    MMPs can be inhibited by chelators.
    MMPs can be inhibited by doxycycline and minocycline.

    http://en.wikipedia.org/wiki/Matrix_metalloproteinase

    There is an oo-going trial of minocycline treatment of autism.

    http://www.nih.gov/news/pr/sep2006/nimh-07.htm

    Chelation treatment may be effective because of the effect on MMPs. Best not to exclude chelation therapy until conventionally studied. Might miss a piece of the puzzle

  15. Joseph October 15, 2009 at 00:33 #

    Or it can be the autism fairy. It hasn’t been ruled out, has it?

  16. Chris October 15, 2009 at 00:47 #

    pD, metals is just a broad category. Perhaps if you had some actual data it would be more tenable. Though the problem with chelation and other treatments is that they screw with essential metals like calcium, potassium and possibly iron. Trust me when I say you do not want to muck with the electrolytes of a kid with a seizure disorder.

  17. Mary Ann October 20, 2009 at 14:30 #

    The treaments that people are using on their kids saddens me. The harm and the hurt they cause them – they treat them as though they are diseased – why not accept them as they are? My son is Autistic and I could never put him through some of the treatments I have heard some parents put their kids through. My son is not high fuctioning Autistic and I certainly never used any freak treatments to get him there. I think these treatments cause more harm then good.

  18. Mary Ann October 20, 2009 at 16:17 #

    Correction on my comment, my son IS high fuctioning Autistic

  19. Outraged Parent October 21, 2009 at 02:43 #

    Laura’s claims are positively inaccurate. I have been a member of the Natural Late Talkers group for the last 3 years. I have also taken my son for many evaluations by multiple pediatricians, Early Intervention, and a very reputable hospital’s autism program. All three have ruled out autism completely (especially now that he is older). He has, however, been diagnosed with Mixed Expressive/Receptive Language Disorder, which is something that the NLT group is no stranger to. In fact, they commonly point out to new members that they ought to mention it to the evaluators. I have found a wonderful community of folks who only want what is best for their child. The vast majority of these folks HAVE their children in good, solid speech therapy and/or occupational therapy programs. As with any group of 3000+ members, you will occasionally have the person who is “in denial” or enlisting the help of quack doctors and treatments, but please don’t throw the baby out with the bath water.

    The group does NOT endorse biomedical treatments nor are the vast majority of the members “in denial” about their child’s supposed autism. They are a group of folks who have simply questioned the system’s methods for diagnosing autism and have chosen to pursue the best course of action for their child. This does NOT mean that they will dismiss the idea of autism completely. The goal of this group is to seek ACCURATE diagnosis. Not to deny their child has a problem.

    If anyone wants a real description of the group’s objectives, just check out their website: http://www.naturallatetalkers.com. It is brief, but I think you’ll get an idea of the overall goal of the group.

  20. Chris October 21, 2009 at 06:46 #

    Dear Outraged Parent: Laura has made exactly one comment on this thread. Those on the NLT group do not have autistic children*, and biomedical treatments are (as I have been told) are actively discouraged.

    Since the topic of this blog posting was the use (or overuse) of biomedical treatments on an autistic child, your comments are completely off topic.

    You should find another way to channel your outrage.**

    * Having one of each (autistic/apraxic and NLT) I know they are completely different.

    ** I have several suggestions, but I don’t think you’d appreciate them. Personally I have found weed therapy and prune therapy to to be very effective. One reason why I had very well pruned roses and espaliered apple trees during IEP periods. Also, since it was usually in November — I was surprised how many tulip bulbs I could plant. Who knew one mom could dig so many holes in a day!? Oh, and another suggestion… never plan other parent/teacher conversations on the day of a two hour IEP meeting. I was so loopy after having the teacher conferences for two kids, that I spaced out of the IEP meeting and was surprised when son’s speech therapy time was doubled.

  21. notindenial October 21, 2009 at 17:41 #

    So, who is cashing in on Autism?? You say those trying to HELP these children via biomeds?? Oh I must disagree. You are targeting the wrong group.

    And you say the biomed yahoo groups will attack and ban those who don’t agree or speak out?? Well, I must disagree. You are targeting the wrong group.

  22. notindenial October 21, 2009 at 17:50 #

    • Sullivan October 21, 2009 at 18:01 #

      notindenial–

      if you want to just post links without adding any information, I will start deleting your comments. I will do so even if you change names again.

  23. Anon November 12, 2009 at 22:24 #

    Two papers on DMSA and autism:

    http://www.biomedcentral.com/1472-6904/9/16

    http://www.biomedcentral.com/1472-6904/9/17

    • Sullivan November 12, 2009 at 23:53 #

      Anon,

      give it a rest.

      DMSA and autism–two papers refereed by chelationists, which make claims that are not supported by the data they collected. Thank god I didn’t get sucked into that nonsense.

  24. Chris November 12, 2009 at 22:36 #

    Yet another drive by contribution by a cherry picker. It would have more appropriate to post your drive-by on this more recent post:

    http://leftbrainrightbrain.co.uk/?p=3360

    Now my mother always told me to consider the source. Now let us look at the source of those papers: Southwest College of Naturopathic Medicine

    Sorry, but that is not a place that practices real science. Plus provoked tests for mercury are not exactly accurate.

  25. Joseph November 12, 2009 at 22:51 #

    Anon is spamming several blogs with those links, apparently, since he just showed up in my 2-year-old post where I was wondering when Dr. Adams was going to publish his paper. Back then Dr. Adams was saying the results might get published within a year.

    The way the results are spinned is dishonest, in my view, but even two years ago it was clear that was the plan. A randomized trial with no significant differences in outcome between groups should normally be interpreted as showing that the treatment was not beneficial. Adams et al. interpret the results as if both groups had been helped by the treatment. They can only do this because the design of the study is not truly placebo-controlled. (Both groups got one initial round of DMSA – the rationale for this is questionable, especially in light of how they ended up selling the result.)

    Why did this spin get past peer review? If you check the pre-publication history, they let you see who the peer reviewers were. They happen to be Richard Deth (of “I wager the thimerosal hypothesis will be proven in 18-24 months” fame) and Ray Palmer (of “mercury from power plants is associated with administrative autism prevalence” fame.) How this could happen, I have no idea, and it frankly causes me to lose confidence in the whole “peer review” heuristic.

  26. Joseph November 13, 2009 at 21:49 #

    It’s illustrative to read Dr. Deth’s “review.” For example:

    8. Do the title and abstract accurately convey what has been found?

    Yes;

    Here’s one where Dr. Deth betrays his interests:

    5. Are the discussion and conclusions well balanced and adequately supported by the data?

    Yes; The Discussion is refreshingly brief and well-focused. However, the authors could/should have discussed the how the level of observed improvement compares with other autism interventions (e.g. ADA etc.). Is it similar? Or superior? They could also have discussed the public health implications of an observed improvement in autism with chelation (i.e. heavy metal exposure as a cause of autism).

    In other words: What the paper is missing is that they should’ve said mercury causes autism.

    Regarding how it compares to other interventions, I think the main question should be how it compares to placebo.

    Ray Palmer then opines:

    This is a well-written, well-conducted study that addresses a timely topic of great current need. Many of the contributors have been in this area of research for many years and have contributed substantially to the field.

    Both declare no competing interests. Let me find the journal’s definition of “competing interest”…

    A competing interest exists when your interpretation of data or presentation of information may be influenced by your personal or financial relationship with other people or organizations. Authors should disclose any financial competing interests but also any non-financial competing interests that may cause them embarrassment were they to become public after the publication of the manuscript.

    Are there any non-financial competing interests (political, personal, religious, ideological, academic, intellectual, commercial or any other) to declare in relation to this manuscript? If so, please specify.

    If you are unsure as to whether you or one of your co-authors has a competing interest, please discuss it with the editorial office.

    The peer-review process of the Adams study was a complete travesty, in other words; practically fraudulent.

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Trackbacks/Pingbacks

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  2. What I’ve been reading – October 2014 | ASD Dad - November 3, 2014

    […] Truth and Consequences – The Anti-Vaccination Movement Exacts a Price. The lengths one mom will go to cure her son, trusting strangers on the Internet rather than credentialed professionals. She quite literally turned her child into a human guinea pig for every new fad treatment she came across. “The ‘treatments’ inflicted on Saul are very painful to read. Mary joined numerous autism ‘biomedical treatment’ yahoo groups. She is presently a member of all the groups in the box, see below, and more besides. She has posted more than 3500 messages to these groups. Mary reveals her willingness to accept medical advice from strangers on the internet, and her trust in doctors employing ‘gross medical misjudgment.’” This is sickening and frustrating, and all-too-common. Read more […]

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