Over on Left Brain Right Brain Kev has just blogged this article in the Mail. The article starts in typical tabloid style:
There is little hope given to parents of children with autism. Mainstream medicine offers no explanation for the cause of this life-long learning disability, thought to affect one in 100, and there are no effective treatments.Perhaps the most cruel characteristic of the condition, which impairs communication development and ability to relate to others, is that children often develop normally until about two years of age, when they suddenly ‘regress’, becoming mute, withdrawn, refusing to make eye contact and prone to tantrums.
Many never take part in mainstream education and some require full-time care, even as adults.
In the absence of solutions, desperate parents are increasingly turning to the world of alternative medicine in their search for a cure.
Or does it? There are the usual buzzwords - hope, desperate, cruel. But autism is described as a life-long learning disability, not strictly true but better than the usual this devastating disease. And the headline
The great autism rip-off …
How a huge industry feeds on parents desperate to cure their children
suggests more substance than I have come to expect from a paper that has done more than most to promote Andy Wakefield and the MMR scare over autism. Now they are investigating the claims of alternative therapists who sell dubious treatments to parents on the back of the media hype about vaccines and autism. The world is turning.
Journalist, Barney Calman posed as a parent and contacted 5 different Defeat Autism Now (DAN) practitioners. All charged serious money just to talk to the parent on their own and suggested an expensive battery of tests without ever seeing the child. All were happy to discuss a variety of treatment options and claimed great success while pointing out that their therapies might not work for a minority of children.
This is the beauty of quackery. You pay money for tests that indicate treatment. But they do not indicate if the treatment will work. So the parent moves on to the next practitioner in the hope of finding the one therapy that will work for their child.
First up was a former GP, David O’Connell who took £440 in consultation fees without ever seeing the child and recommended a barrage of tests on blood, stool and urine costing a further £1546. His recommended treatment is Secretin! He claims that previous studies were flawed. What, even this one? As I wrote elsewhere
The CEO of Repligen had a double interest in Secretin. He was not just another businessman looking for a profit. He was also the parent of two autistic children. He wanted it to work and he was ready to pay handsomely to make it work. Unfortunately his company’s research, rigourously conducted to satisfy the US regulatory bodies, “failed to meet the study’s dual primary endpoints.” That has not stopped other, less scrupulous individals from continuing to promote secretin and even homeopathic secretin as a cure for autism.
O’Connell goes on to state that
I’ve not published my findings in peer reviewed journals because I am unwilling to submit children to double blind trials.
But he will submit them to unproven treatments like Secretin at £450 monthly injection and immune globulin at £550. These quotes are revealing.
‘The only limiting factor is money.’
[...]‘The more injections a child has, the better the result,’ he says.
‘Autism can be a life sentence if you do nothing about it. And the sooner you start treatment, the more chance it will work.’
Parents used to be blamed for causing their child’s autism in the bad old days of Bettleheim’s refrigerator mothers. Now they are encouraged to blame themselves and then pay large sums for unproven and potentially harmful treatments in order to ease their guilt.
Next up was
Dr Asha Rekha Chagarlamudi, a locum GP who runs ‘The Autism Clinic’ one day a week from her home, a semi-detached house on a private estate in Bromley, South-East London.
She recommended IV chelation (Remember Abubakar Tariq Nadama?) and Hyperbaric Oxygen Therapy. (HBOT) She does not seem quite as mercenary as O’Donnell but I was a little perturbed because she is the medical advisor to the Autism Treatment Trust in Edinburgh. That is an eight hour drive away, which is not very convenient if the non-medical Dr Amet in Edinburgh needs treatment advice. Like Dr Chagarlamudi Dr Amet has an autistic child herself and was featured in this blog.
Dr Amet makes the striking claim that her series of blood and urine tests (£480) will give a complete picture of your child’s health and what has caused his autism. Her follow up consultation (£400) will discuss the test results and devise a treatment plan consisting of a special diet and supplements contains no mention of the IV chelation and HBOT recommended by her medical advisor 440 miles away, down in Kent, which is probably for the best.
Surprisingly, the cheapest therapist is based in that bastion of privilege and private medicine, Harley Street. Dr Damien Downing will do an initial consultation, urine and blood tests, follow up and seven rounds of transdermal chelation for just under £700. The only drawback is that transdermal chelators do not work
[S]ome enterprising doctors have formulated skin creams containing chelators like Transdermal DMSA. There are glowing testimonials for TD DMSA on the web. But DMSA is water soluble and so it is extremely unlikely that it could ever pass through the skin. Think about it. Our skin is a barrier that acts to keeps the water in. Without it we would dehydrate and die. It also keeps the water out. We do not absorb water like a sponge when we bathe or shower. So how does the DMSA pass through our skin? It does not. And so there is no way for it to have any effect on our bodies at all.
Calman also went to Dublin to meet
Dr Gabriel Stewart, a specialist in chelation therapy for adults, who tells me he tries to dissuade parents from giving their autistic children intravenous infusions ‘not because it’s dangerous, but because it isn’t effective in clearing mercury from the blood’. Consequently, Archie was not suitable for treatment.
He also warns that some ‘DAN! doctors’ are less than reputable.
‘All you need to do is attend one conference in the US and you can say you’re a DAN! doctor - and many of them aren’t medically trained.’
All this is true. It is also true that Dr Stewart is also a DAN doctor. While his refusal to use IV chelation on children is commendable his website reveals that he is a member of ACAM, whose ambiguities over the use of EDTA were exposed at the time of Tariq Nadama’s death. And he has bought into the entire DAN protocols for treating autism. The scientific bases for these protocols are being seriously challenged by expert witnesses in the Omnibus Autism Proceeedings that are taking place in the USA. See this example where the expert testimony of Dr Dean Jones is discussed.
All in all, an excellent piece of journalism from Mr Calman, marred only by a factual error in a sidebar on What is Autism. The prevalence figure of one in a hundred refers to the entire autistic spectrum. So called classic autism with associated learning difficulties is closer to 1 in 500.
June 1st, 2008
Posted by
Mike |
Autism, DAN!, Quackery, biomedical interventions, chelation, mercury, vaccines |
4 comments
I have written in the past about the case of Abubakar Tariq Nadama here, here and here. In fact my first ever blog post in November 2005 began as an internal discussion document that I wrote for the National Autistic Society [NAS] following Abubakar’s death. It was subsequently published in Communication, the magazine for members of the NAS and roundly condemned by advocates for biomedical interventions in autism. I republished it on Blogger and invited my critics to debate with me there. 145 posts and 1,746 comments later the debate continues.
This week I was shocked to learn that criminal charges against the doctor responsible for treating Abubakar, Roy Kerry MD, had been dropped because the defense had presented new evidence. Science Blogger Orac’s analysis concurred with my feelings that the confusion engendered by misleading statements from the CDC in response to the killing of Abubakar created enough potential for reaonable doubt for the defence attorneys to persuade the District Attorney to drop the case.
But what new evidence could contradict the undisputed facts of a case in which a child was chelated by a physician who had never chelated a child before using a chelation agent with a black box warning that specifically warned against using an IV push to administer the medication? Kerry used the IV push on Abubakar twice and sanctioned the third and ultimately fatal IV push that was administered by a junior employee while Kerry was absent from his clinic.
Just to remind readers.
Abubakar was 5 years old. He was a lively, healthy autistic child. His mother moved with him to the USA to seek treatment for his autism. His father, a doctor who specializes in respiratory diseases, remained in England. Abubakar was seen by Dr Anju Usman, a Defeat Autism Now practitioner, who referred him to Kerry because of persistently elevated levels of aluminium. Kerry used an off label medication to treat him and he died.This is the part that really confuses me.
- I have yet to see any persuasive scientific evidence about a connection between aluminium and autism.
- Even if there were a connection between autism and aluminium there is no clinical indication that any formulation of EDTA, either Kerry’s drug of choice - Disodium EDTA [Endrate] or the allegedly “safe” alternative - Calcium Disodium EDTA [Versenate] has a therapeutic effect on aluminium levels.
- So why did Usman refer Abubakar to Kerry and why did Kerry use Endrate to treat him, not for elevated levels of aluminium, but for lead poisoning? And this despite the fact that Kerry’s own lab tests showed that Abubakar did not have a problem with lead.
The basis for my questions is public knowledge. You can read it in the Order to Show Cause issued against Kerry by the Pennsylvania State Board of Medicine. But you will not find any answers to those questions. I had hoped that a court case would provide answers. The principle players, under oath, would have to tell the truth. So why is there no court case? I began by agreeing with Orac. The CDC flubbed it with their waffle about the wrong chelator, as if there had ever been a right chelator for autism.
But rereading the blogs I came across this entry from Kristina Chew in which she provided a source for the Nadama family’s decision to sue Kerry, his medical practice and his medical supplier, Apothecure. As well as condemning Kerry and his clinic, the legal notice also indicts Apothecure for providing misleading information about the Endrate they supplied to Kerry and accuses them of causing Abubakar’s death.
32. The inaccurate, unsound and dangerous information communicated by the ApothéCure Defendants to Dr. Kerry and Dr. Lewis as described in paragraph 30 was a direct and substantial cause in Dr. Kerry’s commission of the negligent acts described in paragraph 24 and 25. Therefore the ApothéCure Defendants are legally responsible for the conduct described in paragraph 24 and 25.
So is Kerry relying on the incompetence and negligence of his supplier to escape blame for his own incompetence and negligence in the case of Nabubakar Tariq Nadama? Are Pennsylvania going to pursue Apothecure through the courts? Perhaps they should consult with their opposite numbers in Oregon. It seems that Apothecure have a track record of incompetence and negligence in the manufacture and supply of drugs.
There is another possibility. Kerry’s attorney said
He said the defense was prepared to present expert witnesses who would testify the damage that occurred to Nadama’s heart, leading to a lack of oxygen to his brain and his death, was caused by something else, six to eight hours before the treatment at Kerry’s office.
Witnesses would have testified that the chemical used — disodium ethylene diamine tetraacetic acid — was appropriate, and there was nothing wrong with Kerry using an intravenous push instead of a slower I.V. drip to administer it.
So what made this child so sick in the hours before his final, fatal chelation episode at the hands of Kerry? And why was it not apparent and suficient to postpone the fatal IV push. And who are the bojos prepared to give expert testimony in contradiction of the recommendation of the FDA regarding IV push with EDTA? Do tell, soon, please.
Footnote:
This is the letter I wrote to the reporter who broke the story of Kerry’s escape.
Dear Brian
I have just read your report on the dropping of all charges against Roy Kerry in the case of Abubakar Tariq Nadama. I have blogged extensively on this case as has science blogger Orac, whose most recent post, http://scienceblogs.com/insolence/2008/05/no_justice_for_abubakar_tariq_nadama.php#more is in complete accord with my feelings on this matter. My amazement at the decision to drop all charges is only surpassed by my amazement at Kerry’s announcement that he wants to continue in medicine!
Kerry was a member of the American College for Advancement in Medicine. He was listed as a member in 2006, a year after Abubakar’s death. http://www.acam.org/dr_search/index.php?q=Kerry&field=lname&submitted=1 A search today yielded no results. ACAM is an alternative therapy outfit that promotes chelation for heart disease using disodium EDTA aka Endrate because it binds to calcium. The theory is that if heart disease results in calcium plaques forming blockages the Endrate will remove the calcium and destroy the plaques. This is quackery pure and simple and has no basis in science.
Kerry gave Endrate to Abubakar three times in a concentrated IV push, ignoring the black box warnings on the label to only give in a slow dilute infusion. Abubakar showed no indication of any of the diseases for which Endrate is licenced. They used the push instead of the infusion because Abubakar was a lively 5 year old who could not be held still for three hours. 4 adults held him down for 5 minutes strapped to a papoose board for the IV push. By the third treatment his body was so depleted of calcium that his heart stopped.
Although Kerry is no longer listed by ACAM he is on a list of Defeat Autism Now practitioners. http://www.autismwebsite.com/practitioners/us/Roy_Kerry,_M.D..htm DAN supports chelation as a treatment for autism. At the time of Abubakar’s death they made great play of the fact that they supported transdermal and oral chelation and not the IV chelation practised by Kerry. The following year he was admitted to their list after attending a one day conference for clinical training and agreeing to abide by their protocols. DAN’s treatment protocols also have no basis in evidence based medicine. And Kerry’s listing indicates that he will continue to offer IV chelation to autistic children. Will he switch from Endrate to Versenate, the formulation of EDTA that does not pull calcium out of young bodies? Will he use a slow infusion or will he revert to a rapid IV push on children forcibly restrained as in the case of Abubakar? Does DAN know or even care?
If another child should die it is not only Roy Kerry who should appear in the dock.
Mike Stanton
May 9th, 2008
Posted by
Mike |
Quackery in Autism, biomedical interventions, chelation |
2 comments
My article on biomedical interventions for autism in Communication has provoked a largely hostile response. Some people disagreed with me. That is fine. I welcome debate. Others thought the NAS was wrong to publish my article at all.
My article was clearly labelled as an opinion piece. I was described as a National Councillor but that does not mean that I speak for the NAS. It means that I was elected by members who broadly support my views. There are also councillors who do not share my views. The NAS has always been about plurality. That is our strength. We are united by our concern for autistic people, not by our adherence to this or that theory of autism, or by our support for one intervention above all others. Plurality also means that when my term is up you get the chance to re-elect me or not. Those members threatening to resign because of my article really ought to stay and vote me out next time if they feel so strongly.
I do support medical interventions for clearly identified problems like sleep disorders, ear infections and problems with diet and bowel movements. But they must be targeted at specific symptoms and they ought to be properly tested first.
I do believe that these kinds of problems aggravate the difficulties faced by autistic people and their families and that they are often dismissed by medical practitioners who ought to know better. In my opinion dealing with these symptoms turns a sick autistic person into a healthy autistic person. It does not cure their autism.
I have not read any research that persuades me that there is an epidemic of a new form of regressive autism caused by vaccines and curable by chelation. Chelation is a drastic intervention that has not been tested and approved for therapeutic use with young children. It is used to treat heavy metal poisoning. It is not a treatment for autism.
I do object to people who prey on parents and offer them false hopes at great price. In one sense we were lucky because our son was not diagnosed until he was 12. At three years old he had ear infections, sleep problems, tantrums and no speech. If we had been introduced to the biomedical movement then, we would have bought it all. Now he is 20 and applying for a degree course at college, done without the benefit of any biomedical intervention.
Just because these interventions were not essential for my son does not mean that I condemn them out of hand. It does mean that I want research to provide evidence based treatments for all the problems associated with autism.
November 30th, 2005
Posted by
Mike |
National Autistic Society, Quackery, biomedical interventions, chelation, health |
no comments
The key features of the ‘biomedical movement’ are that it is parent-driven and that parental concerns are dismissed by mainstream professionals. Those professionals who do take up the parents’ case often gain iconic status among parents. They are ignored by the mainstream scientific community at first, but expect to be vindicated eventually.
It is parents who have been instrumental in changing attitudes to autism over the last 50 years. Autism is not caused by bad parenting, is not a form of mental illness and our children are not ineducable. We won these battles and we often find ourselves fighting similar battles today with professionals, who think they know autism but do not know our children.
This explains why so many of us are prepared to give the benefit of the doubt to parents who support biomedical interventions. But it is not a coherent movement.
The ‘Mercury Moms’ argue that their child’s autistic symptoms are not ‘real’ autism but are the result of an environmental insult whose effects are reversible; they have been poisoned by the mercury content of the vaccines, routinely administered in the USA.
IMMUNE SYSTEM
Others accept that their child is autistic, but argue that whatever caused their child’s genetic predisposition to autism has given them a weakened immune system that cannot cope with environmental insults, such as vaccines, infections or allergies.
There are those that view autism as a metabolic disorder that will be alleviated by special diets and/or vitamin supplements. Then there are attempts to synthesize all these diverse and sometimes contradictory ideas into an overarching theory.
A number of features of the biomedical movement also persuade me that it is not comparable to the autism movement as a whole.
Those of us in the wider autism movement tend to be open to new ideas but sceptical as well. People in the biomedical camp often seem to have made up their minds and are just looking for the evidence to back up their opinions.
There is debate and differences are freely discussed at our conferences and in our journals. Biomedical conferences seem less open to criticism. Every point of view is equally valid except the one that suggests they might be wrong.
Biomedical research is funded by parent organizations. When independent research contradicts them they claim that it is tainted by government influence or the drug companies.
Our pioneers made sacrifices to prove their point. Many biomedical experts profit by selling their own therapies to the grateful parents whose prejudices are confirmed by their research. To his credit, Paul Shattock, Director of the Autism Research Unit, has not pursued any commercial advantage from his work on biomedical causes of autism.
But let’s not dismiss the whole shebang as being about gullible parents who are ripped off by snake oil merchants. Some children do regress after an apparently normal early life. Autistic people do experience atypical responses to all sorts of environmental inputs, including medications. Autistic children do contract painful gut disorders. Some autistic people do benefit from restricted diets.
REAL SYMPTOMS
The first thing we have to be clear about is that the child’s symptoms are real. Some parents have had their worries dismissed because it is assumed that autistic children will have poor sleep patterns, scream a lot and be difficult to feed anyway. It is experiences like this that explains some parental support for Andrew Wakefield and his theory of the MMR link to autism. If memory serves, Nick Hornby author and a father of a son with autism, stated that he had no axe to grind regarding MMR but the doctors at the Royal Free were the first to take his son’s gut disorder seriously and offer him treatment.
The second point is that some of these symptoms may be connected to a child’s autism. But we do not know how. If you are non-verbal and you have constant earache, you will head-bang. That does not mean that your earache caused your autism. Nor does it mean that alleviating your distress will cure your autism. It means you are autistic and you have an earache.
Anyone with an autism diagnosis should be given a full medical work up in case there any other conditions that need treatment. Too often the diagnostic process stops when autism is identified. There are autistic children who have other conditions that may respond to safe, targeted biomedical interventions. To subject children to treatment of questionable benefit and unquantifiable risk, because of a hypothetical possibility that their autism might have some connection with a biomedical disorder, is unacceptable. As such, chelation should be roundly condemned as a therapeutic intervention.
Autism can be a devastating blow to individuals and their families. But it can be positive as well. The NAS approach is all about maximizing the positives, minimizing the negatives and standing up for the welfare of autistic individuals, above all else. Most of the time we can stand together with parents on this. But, when it does come to a choice between the wishes of some parents and the welfare of autistic people we must have the courage to put autistic people first.
Mike Stanton – Communication Vol 39, No 3, pp36 - 37
November 13th, 2005
Posted by
Mike |
National Autistic Society, Quackery, biomedical interventions, chelation, health, mercury, parents, science, vaccines |
6 comments
