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Thoughtful House acknowledges that chelation can be dangerous and not effective

14 Nov

IV Chelation could cause death, and Thoughtful House acknowledges it:

From a recent story in the Austin Statesman:

Thoughtful House’s IV chelation consent form, which Juli Martinez provided to the American-Statesman, includes a long list of possible side effects that include intestinal disorders, joint pain and, in rare cases, “allergy, anaphylaxis, arrhythmia and even death.” It adds that the treatment offers no guarantee of success.

Wow, Thoughtful House admits that IV chelation, even as performed by them, could cause death.

I have read so many apologists for the doctor who killed Tariq Nadama with chelation. They typically read, “the doctor made a mistake” or “the doctor used the wrong drug” followed by statements that chelation is perfectly safe. And, yet, Thoughtful House seems to be saying that even the correct drug could result in death.

And there is no guarantee of success.

Parents in lawsuit over Thoughtful House treatement

14 Nov

Father takes ex-wife to court over son’s autism treatment is the title of a recent story on Statesman.com. The subtitle: Mother says intravenous treatment at Thoughtful House is unproven and too dangerous..

Yes, it’s about chelation. The kid has been undergoing chelation (suppository), but the father wants to do IV chelation. From the Statesman:

Mario Martinez wants his wife’s consent to let their 7-year-old son, William, undergo intravenous chelation — the use of chemicals to remove metals, such as lead and mercury, from the body. Martinez, 39, said he thinks his son is making steady progress at the Thoughtful House Center for Children in Austin by undergoing a less invasive form of chelation and wants the boy to start IV chelation.

The parents are divorced, with the father having primary care of the child. However, Thoughtful House requires both parents to consent to IV chelation.

The mother states that the suppository chelation has been ongoing for two years (yes, years) without progress, but with adverse side effects:

Juli Martinez said in an interview that her son has been receiving chelation in suppository form for two years, which she claims has made him ill. She said chelation hasn’t helped his autism but being in a regular classroom has.

The father has taken the mother to court to get the approval for the IV chelation.

Chelation is the process of removing metals from the body through drugs. Alternative medical practitioners (such as Thoughftul House) use chelation on the assumption that “heavy metal toxicity” is a factor in autism.

It isn’t. This is based on an incredibly bad hyptohesis (Autism is a “novel” form of mercury poisoning), and idea that actual medical toxicologists reject.

Chelation therapy for real heavy metal toxicity is not a prolonged process. Two years is very long. Chelation by suppository is a relatively inexpensive therapy. By contrast, IV chelation at thoughtful house involves $400 every two weeks in testing:

While there may not be scientific proof that chelation helps autism, anecdotal evidence exists, Mario Martinez said. He is willing to spend an extra $400 every two weeks on tests to make sure the twice-monthly IVs are safe, he said.

The father says that the IV chelation is great:

Mario Martinez, who has had primary custody of the couple’s two children since their 2007 divorce, disputes that chelation has made William ill and said that the boy had an IV chelation test that showed he easily tolerated it. He said it brought “immediate, dramatic results,” in which his learning and behavior improved.

I wonder what an “IV Chelation test” is? Did they do a round of IV chelation, without the mother’s consent? What about their rules that the mother has to approve?

Frankly, the mother should be the one taking the father to court.

The court proceeding has been put off until Dr. Jepson of Thoughful House can appear or give a deposition.

The mother is representing herself. Frankly, a medical toxicologist should step in to offer her some support to end this travesty.

Hyperbaric Oxygen Therapy Ineffective Treatment for Children with Autism

13 Nov

Hyperbaric Oxygen Therapy (HBOT) has grown in popularity over the last few years. This growth has occurred without any evidence that HBOT is at all beneficial.

A recent study, published in the journal Research in Autism Spectrum Disorders entitled Randomized trial of hyperbaric oxygen therapy for children with autism, explores this question.

The study was performed by CARD, the Center for Autism and Related Disorders and ICDRC the International Child Development Resource Center. CARD is a very large ABA provider run by Doreen Granpeesheh. Dr. Granpeesheh is also associated with Thoughful House, the Clinic founded by Dr. Andrew Wakefield. Dr. Wakefield, is the prime proponent of the notion that the MMR vaccine causes autism. ICDRC is the clinic run by Dr. Jeffrey Bradstreet, a prominent name in the autism alternative medical community.

As you might surmise from their press release, Center for Autism and Related Disorders Study Finds Hyperbaric Oxygen Therapy Ineffective Treatment for Children with Autism, they did not find HBOT to be effective.

Children were given 80 1 hour sessions in a Vitaeris 320 inflatable chamber (a model used commonly in HBOT treatment). 6-10 sessions/week were performed. Children were split into two groups matched by age and number of ABA hours already received. Parameters like supplement use and diets remained unchanged during the time of the study. For the treatment group the chambers were inflated to 1.3 atm, with enriched oxygen air (24-28% O2, compared to 21% for regular air).

The children were given multiple assessments:

All assessments were conducted by trained assessors who were blind to group assignment. To maximize the study’s ability to detect change in any symptom area relevant to autism, a large variety of assessments were used, including the following: the ABC (Aman & Singh, 1994), ADOS (Lord et al., 1999), Behavior Rating Inventory of Executive Functioning (BRIEF; Gioia, Isquith, Guy, & Kenworthy, 2000), Clinical Global Impression Scale (CGI; Guy, 1976), Parent Stress Index (PSI; Abidin, 1995), Peabody Picture Vocabulary Test (PPVT-III; Dunn & Dunn, 1997), Repetitive Behavior Scale (RBS; Bodfish, Symons, & Lewis, 1999), SRS, Vineland Adaptive Behavior Scales—Second Edition (VABS-II; Sparrow, Cicchetti, & Balla, 2005), and the Beery-Buktenica Developmental Test of Visual-Motor Integration—5th edition (VMI-5; Berry and Berry, 2004 K.E. Berry and N.A. Berry, The Berry-Buktenica developmental test of visual-motor integration: Administration, score, and teaching manual, NCS Pearson, Minneapolis, MN (2004).Berry & Berry, 2004). The ADOS, BRIEF, PPVT-III, SRS, VABS, and VMI-5 were administered pre and post-treatment. The ABC, CGI, and RBS were administered weekly. The PSI was administered four times, once at baseline, twice during treatment, and once at completion.

The study was relatively small, with 46 participants.

Forty six participants began the study and 12 withdrew, resulting in 18 previous HBOT participants and 16 placebo participants completing all 80 sessions and follow-up measures. The primary reason reported for withdrawal was the travel required to the clinic. One participant in the placebo group withdrew after having a seizure for the first time. Mean participant age was 6.18 (previous HBOT 6.11; placebo 6.25) and mean number of ABA treatment hours per month was 109 (previous HBOT 114.7; placebo 103.3).

I won’t go into details about the specific outcomes, but the conclusion was pretty straightforward: HBOT had no effect.

No significant differences between the previous tHBOT and placebo groups were found on any of the outcome measures. Thus, the results of this study indicate that previous HBOT delivering 24% oxygen at 1.3 atm did not produce a therapeutic effect for the children who participated in our study. Therefore, previous HBOT at this dose is not recommended for the treatment of ASD symptoms.

I found it interesting how they referred to a previous HBOT study by Rossignal (another prominent member of the autism alternative medical community):

The results of this study corroborate the findings of the only other published study on previous termHBOTnext term which included a control group (Rossignol et al., 2009 D.A. Rossignol, L.W. Rossignol, S. Smith, C. Schneider, S. Logerquist and A. Usman et al., Hyperbaric treatment for children with autism: a multicenter, randomized, double-blind, controlled trial, BMC Pediatrics 9 (2009) 10.1186/1471-2431-9-21.Rossignol et al., 2009)—albeit, not the study authors’ interpretations of their findings. In both the Rossignol et al. (2009) study and the current study, both treatment and control groups improved over time, but the difference in improvement between groups appeared insignificant. In addition, the current study employed dependent measures which were far more comprehensive than in previous research on previous HBOT for ASDs, thereby increasing the probability that a therapeutic effect would have been detected if indeed one had been present.

Yes, the current study is consistent with the Rossignol group’s results, just not their interpretation.

Commentary:

There was much discussion and excitement earlier this year when the Rossignol group study came out. Do’C at the Autism Street blog compiled a list of many of the skeptical discussions. There has not been anywhere near the interest in the newer CARD study.

Will this mean the end of HBOT treatments for Autism? I sincerely doubt it. Take a look at Dr. Bradstreet’s website (Dr. Bradstreet being one of the coauthors of the current study showing no effect). The first page of the site still links to the older study by Dr. Rossignol’s group (claiming that HBOT is effective) and not his own study (which shows HBOT to be not effective).

Of course, it is all the more complicated since Dr. Rossignol is also one of the ICDRC doctors. The alternative-medical community is a pretty small pond, isn’t it?

Back to the question: will this mean the end of HBOT in autism? I wish I could make bets this safe. Of course not. No alternative therapy is abandoned. As shown above, one of the authors of this study showing that HBOT is not effective for treating autism and he hasn’t stopped.

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.

Chelation challenge testing: not scientific, not beneficial, may be harmful

13 Aug

Who knows about the toxic effects of mercury? Toxicologists. The premier toxicology group in the U.S, the American College of Medical Toxicologists, represents the doctors who test and treat people suffering from real heavy metal poisoning.

By contrast, many doctors have added chelation to their treatment options due to the false theory that autism is caused by heavy metal poisoning (specifically, mercury). These alternative-medicine practitioners usually depend on non-standard test to “prove” heavy metal poisoning. The favorite seems to be the “challenge” chelation test. In this test, a chelator is given to a person before a urine test. Chelators are chemicals which bind to metals in the body and allow them to be excreted more easily. Thus, if you give a chelator to a person, you expect their urine to show higher levels of heavy metals.

This has been discussed on this blog and elsewhere for a long time.

And now the American College of Medical Toxicologists has come out with an official position statement.

The practice is not scientific. There are no reference values for post-challenge urine metal testing. There is no correlation between actual metal exposure and post-challenge test results.

It is, therefore, the position of the American College of Medical Toxicology that post-challenge urinary metal testing has not been scientifically validated, has no demonstrated benefit, and may be harmful when applied in the assessment and treatment of patients in whom there is concern for metal poisoning.

It’s time for post challenge urine testing to end. It is time for chelation as a “treatment” for autism to end. It is time for those who promoted the “autism is mercury poisoning” theory to step forward and admit their mistakes.

Care Clinics and Doctors Data sued

17 Jul

An alternative medicine clinic specializing in autism, Care Clinics of Austin Texas was recently raided by the FBI and the IRS and appears to be shut down.

According to the Quackwatch website In another action, Care Clinics and Doctor’s Data are being sued:

CARE Clinics, of Austin Texas, its owner Kazuko Curtin, its subsidiaries, and Chicago-based Doctor’s Data have been sued for fraud, negligence, and conspiracy

The complaint is being brought by an adult, apparently not autistic, who claims to have been misdiagnosed for heavy metal poisoning. In a step that could have a big impact on the autism alternative-medicine community, the petitioner is charging that the method of testing for heavy metals, specifically that used by Doctors Data, is fraudulent.

It’s worth repeating: it is hard to underestimate the impact of a successful suit against challenge testing to “diagnose” mercury poisoning.

FBI and IRS shut quack clinics

16 Jul

Readers may remember the investigations by health insurers of CARE clinics. Now the FBI have become involved and CARE clinics have shut.

CARE Clinics, an autism clinic on Bee Cave Road that was being investigated by insurance companies over insurance claims, was raided by the FBI and IRS agents today.

The clinic has been closed, perhaps permanently.

Agents are removing dozens of boxes of documents, but they declined to say what they are looking for. They directed inquiries to Special IRS Agent Mike Lemoine, who did not immediately return a call.
[…]
CARE clinics mainly treated children with autism using alternative therapies typically frowned on by mainstream doctors. Though some parents who brought their children to CARE Clinics say they’ve seen improvements in their child’s autistic behaviors, critics say the clinic uses therapies that lack strong scientific evidence. The clinic commonly uses intravenous chelation on patients, a controversial treatment that introduces a chemical solution into the body to bind with a metal or other substance to be removed.

It’s new! It’s spam! It’s revitaPOP: The MB12 Lollipop

23 Jun

I just got a nice spam email from Stan Kurtz, inventor. See, he invented this lollipop with methyl B12 in it to cure…well…almost everything.

Actually, I am a bit confused on that point. I often am from claims in alternative medicine. You see, from his website, Mr. Kurtz states

MB12 is a very unique vitamin and deficiency can affect vision, intestinal function, the ability to protect against infections and toxins, nerve functioning, and DNA replication.

Dang, it protects against DNA replication!?! Does that sound, well, problematic to anyone else? (see comments below. I mis-read the above statement.)

On his website, Stan Kurtz himself tells us that:

What I can tell you is that MB12 truly changed my life. I suffered for years with irritable bowel symptoms, chronic viral infecitons and ADHD and after I took this product I felt better. Since then I’ve personally observed hundreds of people’s lives change through the supplementation of MB12.

You see, it doesn’t “treat” anything, but it changes your life if you have certain disorders. Also, mB12 is “involved in” a whole host of disorders. No direct claims that mB12 supplementation “treats” the disorders. Just a great big implication.

But, then there is the disclaimer. Always a disclaimer. Gotta have a disclaimer.

These products are not intended to diagnose, treat, cure or prevent any disease

No use spending a lot of time on the contradictory nature of claims made by people touting supplements. Mr. Kurtz didn’t invent this sort of doublespeak, and he won’t be the last to use it.

Still, I thought this “revitapop” thing was odd, so I checked a few things out. Like, Stan Kurtz’s otehr website which touts the benefits of MB12, but also states:

Stan has chosen not to sell or profit from the use of this vitamin.

I guess it depends on your definition of the word “sell” or “profit”? $35 for 30 lollipops sounds like there could be room in there for profit.

What also caught my eye was this: “* patent pending”. It caught my eye because I thought, “How can someone patent this?”

I can’t find the patent application for the lollipop version of MB12, but I did find the patent application for his MB12 nasal spray. Patent application US29012039A1.

Claim one of the patent describes the vast number of disorders that are “treated” with this nasal spray:

A method of treating a psychological or neurophysiological disorder, comprising nasally administering methylcobalamin, or a pharmaceutically acceptable salt thereof, to a person in need of such treatment in an amount sufficient to treat the disorder in the person, wherein the disorder is selected from the group consisting of:attention deficit hyperactivity disorder (ADHD), anxiety, depression, stress and chronic stress, socialization problems, mood problems, behavior problems, memory problems, dislexia, depth perception problems, color viewing problems, visual and auditory processing problems, light modulation problems, night vision problems, speech problems such as finding words, apraxia, and articulation problems, sleep regulation problems, eye or muscle movement problems, chronic fatigue problems, digestion problems, sensitivity to chemicals, viral infection, inflammatory conditions such as rheumatoid arthritis, sciatica, and fibromyalgia, asthma, irritable bowel, colitis, tinnitus, migraines, nail biting, and autoimmune problems.

Typical of alternative medical treatments–they treat everything. Always a warning sign, if you ask me. It is interesting to me that autism is not specifically mentioned in the patent. There must be a reason for that.

Is this really new, or novel, as they say in the patent business? It seems that that there is already a patent on nasal sprays to administer Vitamin B12, Vitamin B12 nasal spray and method of use. Filed in 2006, and it mentions mB12.

There is a phrase in patent law: obviousness. Taking one invention, say, mB12 nasal spray, adding it to another supposed invention, treating certain disorders claimed to respond to mB12 is, well, obvious. As they say, anyone “skilled in the art” would put those together.

Even if this doesn’t meet the definition of non obvious, I still think this patent has little chance of success. Consider this paragraph from the US Patent office:

In order for an invention to be patentable it must be new as defined in the patent law, which provides that an invention cannot be patented if: “(a) the invention was known or used by others in this country, or patented or described in a printed publication in this or a foreign country, before the invention thereof by the applicant for patent,” or “(b) the invention was patented or described in a printed publication in this or a foreign country or in public use or on sale in this country more than one year prior to the application for patent in the United States . . .”

(emphasis mine)

Mr. Kurtz’ patent application was field March 17, 2008.

mB12 nasal sprays–as touted by Mr. Kurtz himself–have been discussed online since at least 2005. I guess Mr. Kurtz is counting on the patent examiner not checking the AutismOne website for Mr. Kurtz’ own talk on nasal spray mB12 in 2006. But, even without that, Mr. Kurtz’ own website has discussions of the nasal spray from March 16, 2006– that predates his patent application by 1 year. 1 year and 1 day. Ironic, that.

It will be interesting to see the lollipop patent application. I mean, there are vitamin B12 lollipops already, too. I wonder when Mr. Kurtz first publicly discussed his lollipop invention? Did he shoot himself in the foot here too?

2-Fatality HBOT Fire

14 Jun

Admittedly, the future for Francesco Martinizi (the boy who was very badly burned in a fire/explosion in a Florida HBOT clinic while apparently being “treated” for Cerebral Palsy), looked quite uncertain.

As I wrote previously:

Yes, this accident (fire/explosion) is tragic, very tragic. If Francesco indeed survives the injuries he’s apparently sustained, the next couple of months are likely to be very very rough. The situation certainly isn’t helped by the fact that there probably isn’t much in the way of good scientific evidence to support the notion that little 4 year-old Francesco should have ever been in such a facility in the first place.

His future is certain now. Francesco died Thursday.

Media reports:

Child Hurt In Chamber Explosion Dies In Hospital

Boy critically burned in Broward oxygen chamber explosion dies

Boy dies from injuries in hyperbaric chamber blast in Lauderdale-by-the-Sea

Boy injured in hyperbaric chamber blast dies

Previous entries at LBRB:

Fire, Fatal Injury, and Claims of Certification in an Independent HBOT Clinic

HBOT quackery maims 4 year old

Woman and child hurt in HBOT explosion

In Pace Requiescat, Francesco.

Question for commenters: What do you think about the mainstream media’s coverage of this fatality?

Circling the Wagons

29 May

The alternative medicine community is certainly loyal to their own. This seems especially true in the world of Autism where no idea is ever abandoned, no practitioner ever criticized.

After the Chicago Tribune published articles on the Geiers (and here), as well as Dr. Mayer Eisenstein, it was a forgone conclusion that the community would close ranks.

These articles were published right before the AutismOne conference–which chose to honor Andrew Wakefield after news was released that he may have altered his data. See what I mean? No quicker way to be a hero than to have really the skeletons in your closet made public.

The most basic response was from Kim Stagliano, who let this tweet on Twitter:

From Kim: Chicago Trib is close to dead. Suddenly launches full frontal attack on autism during Autism One. AAP in backyard. They hear us.

Yes, the Tribune is bad and in the pockets of the AAP and the AAP are evil. Please.

Dan Olmsted came out rather quickly with a piece in the Age of Autism blog in defense of the Geiers and Dr. Eisenstein. Later, Anne Dachel did another piece.

Both use a simple contrivance: avoid the real questions raised by the article. Instead, write about “what the Tribune story should have included”. This is especially true of Anne Dachel, who went on and on over pretty much all the media talking points of the vaccines-cause-autism movement.

For example, both Mr. Olmsted and Ms. Dachel thought the Tribune should have discussed Dr. Bernadine Healy. The connection to the story? None. But, Dr. Healy is vitally important to the story Olmsted and Dachel want to tell. See what I mean?

Dan Olmsted’s method sidestepping of the real questions was rather poorly done. In his piece, he writes:

The article lumps Lupron — about which I know nothing, and have no opinion — in with alternative approaches like diet, about which I do know something, and do have an opinion.

Frankly, I found this a ridiculous statement. Dan Olmsted was attending the AutismOne conference–a conference which for years has hosted talks by Mark Geier on Lupron and which Dan Olmsted has attended for years. I guess he missed the Geier talks?

It isn’t as though Mr. Olmsted isn’t able to form an opinion on scant data. Mr. Olmsted has shown a particular interest in Kathleen Seidel–to the point where Mr. Olmsted “diagnosed” her kid with mercury poisoning based on a paragraph in the book Autism’s False Prophets. From only a snippet (wrongly interpreted by Mr. Olmsted) about one of Ms. Seidel’s previous jobs, Mr. Olmsted claimed that she had high levels of mercury, and further stated:

Laugh me off if you want, but I have spent a lot of time looking for plausible links between parents’ occupations and autism in their children, and I know them when I see them.

So, he’s willing to go out on a limb based on a few words in a book, but, say, the page after page that Ms. Seidel wrote about the Geiers and Lupron (e.g. here, here and here) left no impression?

Sorry, Mr. Olmsted. I know ’em when I see ’em too. I see you dodging really tough questions about the Geiers in an effort to protect one of the big names in autism psuedoscience.

To further point out how silly the “about which I know nothing, and have no opinion”, one of the readers of that blog piece pointed out:

Dan, last year AoA published a post from Kent Heckenlively entitled “MERCURY, TESTOSTERONE AND AUTISM – A REALLY BIG IDEA!” In the comments, you said that you had gone to the Geiers’ house and witnessed a child receive a Lupron injection and improve immediately. You “just had to put this on the record,” you said.

I take the fact that Mr. Olmsted has gone from Lupron shill to even this weak distancing himself from Lupron (“I know nothing”) as a good sign. Even Dan Olmsted must be seeing the cracks in the Lupron Logic.

Ms. Dachel does her own “two step” around the question of her real opinion on Lupron.

Let me say that I’m not an expert on any of the medical aspects of this; I’m merely an observer. So here’s what I’m seeing.

Since when does not being an expert on the medical aspects stopped anyone at the Age of Autism blog from making very clear opinionated statements?

But, again, I take the clear signal that she is willing to distance herself from Lupron as a small, but positive sign.

So, let me use their contrivance–let me list what Mr. Olmsted and Ms. Dachel should have written about in their blog pieces. Let me list many of the real questions raised by the articles in the Tribune. As you read this list, it will become obvious why the Olmsted/Dachel tag-team avoided these questions: these are serious questions about people possibly harming children with autism and Dan Olmsted and Anne Dachel don’t have answers to these questions.

At least, they don’t have answers which would satisfy their readership.

Here is the list of questions I had after reading the Tribune articles:

1) Are parents still being sold the idea that Lupron will help remove mercury from their autistic children?

2) Are parents still being told that mercury causes autism? (OK, we all know the answer to that one. The answer is yes. No amount of data will convince Mr. Olmsted.)

3) Are the diagnoses of “precocious puberty” valid? Would a real pediatric endocrinologist agree with the Geier’s assessments? From the Tribune, quoting an actual expert in precocious puberty:

None of the data verify or even suggest that any of these patients have precocious puberty.

4) What is the purpose of all the extra lab tests the Geiers are performing? Are they for the Geiers’ research? If so, why should the parents (or their insurance) foot the bill?

5) Why do the Geiers use 10 times the normal dosage of Lupron?

5) Is Lupron being used as a chemical restraint?

6) Does Lupron even work well enough to warrant its use? Given that Dr. Eisenstein is reported to be close to dropping Lupron, it clearly isn’t a “miracle drug”.

7) what are the side effects of extended use of Lupron. Especially, what are the side effects of wrongly delaying puberty? According to the Tribune story:

Experts in childhood hormones warn that Lupron can disrupt normal development, interfering with natural puberty and potentially putting children’s hearts and bones at risk.

8) Why don’t the Geiers recommend patients to see board certified pediatric endocrinologists?

9) If precocious puberty is so prevalent amongst children with autism, why don’t pediatric endocrinologists see it? According to the Geiers:

Mark Geier responded that these are “opinions by people who don’t know what they are talking about,” saying the pediatric endocrinologists interviewed by the Tribune don’t treat autistic children and have not tried the Lupron treatment.

10) What about older kids the Geiers are treating? Are they being correctly diagnosed? From the Tribune story:

David Geier said his father diagnoses high-testosterone teens not with precocious puberty, but with another very rare condition: testicular hyperfunction.

How does “testicular hyperfunction” explain the older girls the Geiers have treated?

11) The effects of Lupron on sex hormones are temporary. Stop the shots, the hormones return. The loss of the beneficial effects of puberty are permanent. Does the trade off make sense?

And that is just the list of questions based on the article on the Geiers. Then there is the story about Dr. Eisenstein. This too raises a number of tricky questions.

1) Is Dr. Eisenstein a credible resource for information? After reading the article, one has to question that.

2) Would people like Anne Dachel, Kim Stagliano and Dan Olmsted recommend people see a physician whose malpractice insurance may be “phony”?

In court records dating back three decades, the families of dead and brain-damaged children repeatedly alleged that doctors who work for Eisenstein made harmful mistakes — sometimes the same error more than once. His practice also has been dogged by accusations in court records that its offshore malpractice policy was phony.

3) Would Is Dr. Eisenstein’s record of selling “illegal” health insurance troublesome?

He also dabbled in group health plan sales to Illinois families but tangled with state insurance regulators in the mid- to late 1990s. Regulators warned consumers in a newsletter that Eisenstein “continued to illegally market” the Homefirst Health Plan, based in the British Virgin Islands, even after they told him the plan was ineligible. Despite this, he continued selling the plan, records show, and they ordered him to “cease and desist.”

4) Dr. Eisenstein seems to be good at blameshifting. In this case he accuses the parents of making a mistake that appears to be clearly that of his colleague at HomeFirst. Is this the sort of doctor parents of autistic kids should be seeing?

A Homefirst doctor took a sample of blood from Na’eem’s umbilical cord that could have been used to diagnose the problem and could have led to prompt treatment, according to court testimony. But instead of dropping off the sample at the lab, the doctor said under oath, he was tired, went home and put the sample in his refrigerator, where it sat the whole weekend.

In an interview, Eisenstein blamed the parents for not taking the baby to the emergency room for a blood test. Na’eem’s parents testified that no one from Homefirst ever told them to go to the emergency room.

5) Dr. Eisenstein appears to make some rather questionable decisions about insuring his own practice. Also, it appears from this quote that perhaps he has gone without malpractice insurance. Again, is this the sort of doctor parents of autistic children should be using?

After Nathan Howey’s death, Weiss Hospital sued Homefirst, Rosi and Eisenstein for fraud, alleging they misrepresented their Caribbean-based malpractice policy. Eisenstein testified that he was in St. Kitts helping one of his daughters, a veterinary student there, buy a condo when the lawyer who helped arrange the sale told Eisenstein he also sold malpractice insurance.

“I was tickled pink to get insurance,” he said under oath.

A Cook County judge called it an “improperly underwritten insurance plan.” Eisenstein, who says the policy is legitimate, agreed to pay Weiss $50,000 after mediation.

6) Dr. Eisenstein appears to have inflated his credentials:

Eisenstein said under oath that he was a faculty member at the Hinsdale Hospital Family Practice Residency Program from 1992 to 2003. A hospital administrator testified that Eisenstein “never was” a faculty member. In a recent interview, Eisenstein said that while he wasn’t a faculty member there, he did teach students from that program and kept snapshots of them.

(anyone else reminded of Vera Byers, witness for the petitioners in the Omnibus, who claimed to be faculty at UCSF? In reality, she used the library and attended parties there.)

7) Lastly, is this the type of doctor we should be taking our kids to?

Reflecting on the $1.275 million malpractice settlement, he appeared unshaken.

“It’s the cost,” he said, “of doing business.”

I’m sure the parents were glad to hear that their kid’s life was “the cost of doing business”.

There are a lot of questions raised by these stories. Hard questions. Questions Mr. Olmsted, Ms. Dachel and Ms. Stagliano should answer if they want to really serve their readership.

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