Treating Autism is hosting the two day Autism-Biomedical Conference at the Bournemouth International Centre with funding from the National Lottery this weekend. (Friday 9th and Saturday 10th February)
Regular readers of this blog will not be surprised to learn that I have misgivings about this. Basically the DAN! protocol is being promoted in a big way in England for the first time. This follows on from the success of Action Against Autism in setting up a DAN! clinic in Scotland under the leadership of Lorene Amet following their biomed conference in Edinburgh in October 2005.
I have three major objections to DAN!
- They accept as fact that there is an epidemic of autism caused by environmental toxins.
- They claim that by using chelation to remove these toxins children can be recovered from autism.
- Any charlatan or quack can become a DAN! practitioner merely by doing an eight hour training session at one of their conferences. Children have been sexually abused, injured and killed by DAN! practitioners whose details are still up on the DAN! website with no warnings about their professional misconduct.
I am particularly surprised that Anju Usman is such a prominent speaker at this conference. Dr Usman was the DAN! practitioner treating Abu Bakar Tariq Nadama after his mother took him from Britain to America seeking a cure for his autism. Dr Usman referred him on to Dr Kerry. Tariq subsequently died as a result of the treatment prescribed by Kerry. According to Kerry’s case notes, published by the Pennsylvania State Medical Board as part of their case against him,
“We don’t have the entire record at all. Mother left her entire volume of his records home. But we have been in communication with Dr. Usman regarding EDTA therapy. He apparently has a very high aluminum and has not been responding to other types of therapies and therefore she is recommending EDTA, which we do on a routine basis with adults. We therefore checked him to it … But on testing for the deficiency indicator we find him only indicating the need for EDTA at the present time. Therefore we agree with Dr. Usman’s recommendation to proceed with the treatment. She recommends 50mg per kilo. He is 42 pounds today. So we’ll treat him with a 20-kilo child and give 1 gram of EDTA.
Later on Pennsylvania State Medical Board reports that Usman actually recommended calcium disodium EDTA.
43. A physician who previously treated Tariq. recommended treatment with CaNa2EDTA as recently as June 2005.
There are two forms of EDTA. Disodium EDTA is used for the emergency treatment of hypercalcemia and in control of ventricular arrhythmias associated with digitalis toxicity. Tariq did not have either of these illnesses. Calcium disodium EDTA can be used to treat aluminum poisoning but is more commonly used for lead poisoning. The calcium is added because disodium EDTA on its own also binds to calcium. Tariq died because the disodium EDTA depleted his body levels of calcium to such an extent that his heart stopped.
The Pennsylvania State Medical Board also notes that Tariq had low levels of iron. And Usman had referred Tariq to Kerry because of high aluminum levels. Deferoxamine is often used to treat aluminum poisoning. It also binds to iron. If Usman was using that to treat Tariq it would explain his low levels of iron. It does not explain why she sent him to Kerry, a doctor who never ever used calcium disodium EDTA. He only ever used disodium EDTA
Even if I was a true believer in biomedical cures for autism, before I ever invited Dr Usman onto a conference platform, I would want to know
- Did she use Deferoxamine on Tariq? Was she monitoring his iron levels?
- Did she specify CALCIUM disodium EDTA to Kerry when she referred Tariq?
- If so, would he not have told her that he never used it and did not have it in stock?
- Did she understand at the time how different the two forms of EDTA are?
- Did she object when Kerry was granted DAN! status AFTER he killed Tariq?
We know that Kerry is unfit to practise medicine. Until questions about her role in the death of Tariq are settled there are serious doubts about Dr Usman. Will she answer these questions in Bournemouth? Will they even be asked? for Tariq’s sake, and for the sake of all the potential Tariqs, I hope so.
Action For Autism 
Unfortunately, DAN has quackery written all over it.
1) It says that it can cure a problem no one else can,
2) It promotes unsubstantiated methods of treatment,
3) Its practitioners are described as being “alternative”, and don’t have pertinent mainstream training, and
4) any “research” or “evidence” they have is never reported in mainstream, peer reviewed journals.
The worst thing is that not only will many unsuspecting desparate people spend a lot of money and time buying in to their “alternative” methods, but that people have died, and will continue to die if their methods are allowed to continue to be practiced.
I’ve just read quickly through the Order To Show Cause document.
Holy shite!
This bit actually irks the crap out of me: “We don’t have the entire record at all. Mother left her entire volume of his records home. ”
As a practitioner myself who conducts case reviews, I find it utterly incredible that someone would go ahead and take a case on for treatment without having seen the full volume of records! I could not possibly conduct a case review with any accuracy without having seen the whole volume of notes. I might make synopses of notes I get to see but have no way of getting full copies of. But I would either request copies of notes or request to see actual evidence in the form of notes that I could summarise myself. And – usually – clients comply. One client actually photocopied her son’s entire set of notes and sent them to me from Joensuu to Kotka.
Without seeing these background details, no practitioner is in a position to review a client’s case, let alone treat a client.
So, when Dr. Anju Usman took this case on – without the full background records – and referred on to Dr. Kerry – again without full background records – she in fact engaged in an act of malpractice.
She went against her AMA Code of Medical Ethics:
Principle 2: # A physician shall uphold the standards of professionalism, be honest in all professional interactions, and strive to report physicians deficient in character or competence, or engaging in fraud or deception, to appropriate entities.
Principle 5: A physician shall continue to study, apply, and advance scientific knowledge, maintain a commitment to medical education, make relevant information available to patients, colleagues, and the public, obtain consultation, and use the talents of other health professionals when indicated.
Principle 8: A physician shall, while caring for a patient, regard responsibility to the patient as paramount.
http://www.ama-assn.org/ama/pub/category/2512.html
Club 166, you’re going to love this bit. Went to this site (http://www.autismwebsite.com/ARI/dan/dan.htm) to try and find the DAN! code of practice. I found no such document. I did find this: “We do not at present have any means of certifying the competence nor quality of practice of any practitioner. We hope to be able to do so in the future.” (http://www.autismwebsite.com/ARI/dan/danusdis.htm)
Looks like the perfect ‘cop-out’ clause to me.
I’m not sure they have a code of practice at DAN!. When I searched the site for ‘code of practice’, I got this: http://www.google.com/custom?q=%22code+of+practice%22&sa=go&cof=GALT%3Ablue%3BS%3Ahttp%3A%2F%2Fwww.AutismResearchInstitute.com%3BVLC%3Apurple%3BAH%3Aleft%3BLH%3A102%3BLC%3A%232988E5%3BGFNT%3Agrey%3BL%3Ahttp%3A%2F%2Fwww.autismwebsite.com%2Fari%2Fimages%2FARILogo_sm.jpg%3BALC%3A%232988E5%3BLW%3A255%3BT%3Ablack%3BGIMP%3Ared%3BAWFID%3Ae2d5748db015c45d%3B&domains=www.autismwebsite.com%2Fari&sitesearch=www.autismwebsite.com%2Fari
“Your search – “code of practice” – did not match any documents. ”
Removing the quote marks takes one nowhere nearer to finding a CoP.
In the BPS Code of Practice for Educational Psychologists, I found this: “When working with young people, educational psychologists should base assessment,
intervention and advice offered on the fullest and most accurate information that is
available.”
I believe that the AMA would have a similar clause in their code of practice. I am not satisfied that Usman or Kerry acted in accordance with the AMA equivalent clause since they were aware that they did not have the boy’s records (which were left at home in the UK).
This point provokes a few questions, doesn’t it?
– why would they leave the records there?
– since when does one go abroad for treatment without taking the home practice records with one?
– were they specifically asked NOT to bring these records?
Even before we get to the treatment stage, there are too many questions regarding the actual assessment phase in this case.
You pointed out, Club 166: “Unfortunately, DAN has quackery written all over it.”
And it was set up by someone with a licence to practice, issued by a state board.
So much for these boards being the means by which quality of care and treatment are guaranteed.
I’ll restrict my comments to Yanks since I am one.
Americans simply don’t have a sense of shame. It can be both good and bad. In this case it’s bad and if the fool hasn’t come out in public and admitted that she was complicit in this tragic event then you’re right, all her current and future patients are at risk. How difficult would it be to say, “I screwed up in dealing with Tariq and I should have never dealt with Kerry, who killed an innocent child”? That’s how we know you’ve learned something, Miss DAN!ette; isn’t Tariq worth that?
Americans simply don’t have a sense of shame.
Agreed. And we also have a propensity to export the worst things about us to the world at large.
I am fascinated by the ellipsis in the published excerpt from the case notes.
“We therefore checked him to it … But on testing for the deficiency indicator we find him only indicating the need for EDTA at the present time. ”
What does that … conceal? Dr Kimball Attwood, writing on Health Care Renewal wonders
“if “testing for the deficiency indicator” refers to the use of an “electrodiagnostic” device, a popular method for making such pronouncements appear legitimate to scientifically naïve patients.”
According to Quackwatch the use of this device is commonly referred to as “Electroacupuncture.” No prizes for guessing that Roy Kerry offers “Electro-Accupuncture ” [sic] among his many other accomplishments.
David,
sorry about the delay in posting your comment. My spam filter traps any comment with more than two active links in the text. I only found your comment when it trapped mine!
no problem, Mike…. 🙂
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One person died in the states because of a duff doctor administering an overdose of a drug. Well please correct me if I’m wrong, but don’t people die every day in UK hospitals because somebody gave the wrong dose of something or other?
What a broad sweeping article, suggesting that parents of autistic children are going to be suckered by DAN doctors. Nonsense.
Thank you for your scientific analysis of EDTA . Perhaps you can do one also on DMSA for me? The suggested chelator by the major DAN doctors.
Questions for you….
1/ A DAN doctor suggested giving MB12 injections, citing autistic children are under methylators. Is he wrong?
2/ A DAN doctor suggested giving autistic children mega doses of B6, citing that they have depleted levels of dopamine and serotonin. Is he wrong?
3/ A DAN doctor suggested giving L-glutathione supplement, citing that autistic children have problems detoxifying. Is he wrong?
4/ A DAN doctor suggested giving EFA omega-3, citing research showing autistic children have lower levels. Is he wrong?
5/ A DAN doctor in the USA (breaking research) actually points to a significant problem with autistic children metabolising fatty acids. Is he wrong?
OK, I don’t really want you to answer those questions. I don’t want to hear your answers. To me the point is that you appear to be rubbishing doctors carrying out research into autism, citing that one child died using an untried drug.
Shall we ask these doctors to stop, because you don’t like them profiting from their discoveries.
As with any ‘business’ there are charlatans, and people who just want to make money out of you.
That does not mean that many of the discoveries by these DAN doctors, do not hold up to scrutiny.
For me, the UK mainstream medical fraternity haven’t got a clue about treating autism. We are 10 years behind America and I welcome any research that makes it into the media in this country…and I most certainly welcome the treatingautism team bringing doctors over to explain their findings and research.
ps. just because DAN have a protocol, does not mean that it has to be followed to the letter. It does not mean that certain items within that protocol won’t work, and I believe it is not intended to sucker families in, but help them.
Eric
Tariq died because Usman sent him to Kerry. Usman is a major DAN doctor. She was the main speaker at the most recent biomed conference in the UK. She is one of the people involved in training DAN practitioners. Since Tariq died Kerry has joined the list of DAN practitioners – i.e. he went to a DAN conference and did a day’s training with someone of Usman’s calibre.
Never mind DMSA. Usman sent Tariq to a doctor who only ever uses disodium EDTA. Why? And why is Kerry now a DAN practitioner and what does Usman have to say about that?
Blah blah blah-
I read this hogwash from Dr.s claiming that DAN doctors are quacks. Look at each one guys. Most are pediatricians who left their practice to help the thousands and thousands of the poor children who have been so wrongfully poisoned by mercury. These Angels sent from Heaven are here to raise awareness that there is a cure for mercury poisoning. They are also helping get our kids off those darn drugs used for ADD and ADHD. I DARE anyone of you to step up to the plate. STOP placing labels on these Doctors and instead congratulate them for doing something meaningful with their lives. Had we listened to our Quacky pediatrician, who over and over told me that my son would eventually “come around”, and “he’s just delayed”, “boys are slow”, etc, we never would have had the opportunity to embrace the world with our now CURED son!!! DAN is simply Defeat Autism NOW! These Doctors are here to fix the mess you blaming idiots put these poor helpless infants in. Perhaps rather than pointing fingers, all you so called Doctors of Medicine need to rethink the crap these drug companies are telling you. Step aside from the massive dollars that pad your wallets for injecting garbage into our infants and RETHINK. Yes, Mommy and Daddy didn’t pay for that college education just so that you can vacation 6 weeks or more a year. Please, I beg you to please look at what is happening here. CDC announced 1/150 kids are autistic. 4 to 1 boys over girls. This means that 1 in 60 women who are pregnant with a boy has a chance of having a child who is autistic. Genetic? Hogwash guys. Do your homework. Read about genetics. Perhaps we need to revisit the vaccination schedule. Mmmm, there may lie an answer. I am not saying stop vaccinating. BUT change the damn schedule. Stop poisoning infants!!! Who are the true bad guys here?
********************************************Charlie was severely autistic, non-verbal, screaming etc. through diet, love, prayer, vitamins, some chelation therapy, and tons of therapy we got our son back. He is now mainstreamed in school with a paraprofessional. The school watched in amazement a child who could not speak or follow any command, transform into a brilliant student. We have it on video tape. AND yes, we did this under Dr. Usman’s wing. She is our angel.
JoAnn
as you know Dr Usman perhaps you can ask for clarification of the 5 questions at the end of my post.
Did she use Deferoxamine on Tariq? Was she monitoring his iron levels?
Did she specify CALCIUM disodium EDTA to Kerry when she referred Tariq?
If so, would he not have told her that he never used it and did not have it in stock?
Did she understand at the time how different the two forms of EDTA are?
Did she object when Kerry was granted DAN! status AFTER he killed Tariq?
Mike, you are dodging Eric’s questions re: B12 and glutathione. Look, I’m certain that Dr Usman et al are sick with despair re: the child who died, but unfortunately sometimes people make mistakes. (Did the first brain surgery patient survive?) More importantly, do you have or know a child who has chronic diarrhea and severe GI problems, lives in a daze, throws wild temper tantrums, bangs his head on the floor all the time and wakes up several times a night screaming? I used to. He was my son. He was quite simply in a lot of pain. But thanks to Usman and DAN!, not any more. No doubt, chelation is serious stuff, but these kids are seriously sick. Let us treat the inner biomedical issues, not just the outer behavioral issues, and maybe these kids will simply act better. DAN is more than just chelation – so if you want to pick your battle against chelation, that’s okay, it is serious stuff, but if you honestly evaluate everything that the DAN protocol prescribes, you’ll find a series of common sense solutions to a series of complex biomedical issues with these kids. I think unfortunately you are doing your readers a disservice by oversimplifying the argument and since you have problems with chelation, all DAN doctors are evil money-hoarding quacks. This is not the case. There are thousands of parents like my wife and I who are educated, practical people who simply want our children to feel better. Then, they’ll act better. I know all pediatricians have only the best intentions for their patients and if so, since autism is a controversial epidemic, every pediatrician should with an open mind read “Children with Starving Brains” by McCandless, and then “Recovering Autistic Children” by Edelson / Rimland or “Autism – Effective Biomedical Treatments” by Pangborn / Baker. They don’t have to go sign up to be DAN doctors, but I guarantee you they’d stop calling them quacks. The science is there. The science is real. Most pediatricians do not commonly run the types of blood, hair, urine and stool tests that DAN doctors run. And, it is not cheap, so they commonly have a hard time justifying the tests. We need to build a community of cooperation, and I think reviewing these books would go a long way in getting us all headed in the same direction. Let’s do it for the kids.
Mike, you are dodging Eric’s questions re: B12 and glutathione.
Usman referred Tariq to Kerry because of alleged elevated levels of aluminium. There is no mention of B12 or glutathione in the Order to Show Cause issued by the Pennsylvania State Board of Medicine. Anyone who wants to comment on Tariq’s death really ought to read this document in full.
Look, I’m certain that Dr Usman et al are sick with despair re: the child who died,
“the child who died” has a name, Abu Bakar Tariq Nadama. Can you point me to any public statements by Usman about Tariq’s death?
but unfortunately sometimes people make mistakes. (Did the first brain surgery patient survive?)
Kerry did not make a mistake. He used his chelator of choice – disodium EDTA. He elected to disregard the manufacturer’s instructions to give an IV drip over 90 minutes because he did not think that Tariq would be able to stay still long enough to tolerate that, even when strapped to a papoose board with adults in attendance to provide restraint. Tariq was 5 years old.
More importantly, do you have or know a child who has chronic diarrhea and severe GI problems, lives in a daze, throws wild temper tantrums, bangs his head on the floor all the time and wakes up several times a night screaming?
This does not describe Tariq. He was an energetic and happy child according to Kerry’s records as published by the Pennsylvania State Medical Board.
All of you are dodging my question. What do you think of Kerry being given DAN status after Tariq died in his care and while a Standard of Care hearing against Kerry is still proceeding? Would you trust your child’s treatment to Kerry?
First let me apologize, I did not mention Tariq’s name because I was typing fast and was unsure of the spelling. I should have taken the time to mention him by name. Usman is our doctor, and I do not know if she has publicly apologized, and no, I probably would not trust my son’s treatment to Kerry. I absolutely trust my son’s treatment to Usman, as much as any patient can trust a doctor. At the risk of sounding like I’m placating you, I understand your outrage about Kerry and he very well may be a bad doctor and you should continue to scrutinize him. Please allow me to close the book on this part of the argument. I was responding to your general comments about all DAN doctors and some of the other comments that have been made here. The “mainstream” community does not at all link mercury or vaccines to autism, so then by definition DAN doctors are “alternative”, but they’re not charlatans or quacks, they are mostly MD’s and DO’s. DAN doctors are convinced that there is a link. I can tell you this definitively: my son has vaccine-strain measles and rubella in his lower intestines. He does not have these diseases, per se, but he has a manifestation of them in his gut. Where did this come from? I’m thinking it was the vaccine that gave him the vaccine-strain. I agree w/ Sworan above – I too am not anti-vaccine, but we simply need to change the vaccine schedule and also eliminate ALL mercury. Even though mercury has been removed from most vaccines and shots, it is still in some shots, like the flu shot, and it is also sometimes used for cleaning vaccine-making equipment. The reduction of mercury has, some are saying, anecdotally reduced the severity but not the frequency of autism. Most doctors would never even consider running the tests and biopsies that detect this. This along with other environmental / external toxins and a genetic susceptibility can cause autoimmune, GI, and brain-development issues. The villi are damaged, the body can’t absorb nutrients (“leaky-gut syndrome”), and the brain does not develop correctly. Wheat often adds to the trancelike symptoms. Thus, autism. (See the aforementioned McCandless’ “Starving Brains” book). The GI and immune systems are closely-linked. DAN doctors run the aforementioned tests to see what exactly is going on inside these little kids’ bodies and they prescribe any or all of: occupational, developmental, physical and speech therapies, vitamins, probiotics, digestive enzymes, fatty acids, restricted (gfcf) diet with attention to food allergies, etc, in order to boost their immune systems, which have been assaulted at an early age by too many vaccines, so that they may heal themselves. (See the other two books I mentioned, written by doctors.) They do not blindly prescribe IV chelaton hoping for some miracle, and also there are several chelation options, some more mild, such as creams, etc. Meanwhile, last I heard, the mainstream medical community is hoping for a “cure” in 7 to 10 years. Great, my son will be 10 by then. Everyone agrees you have to catch this early. If I wait until he is 10, not only will we lose our son, but he will not be self-sufficient and be a burden on society, needing constant care. I honestly can’t tell you why there haven’t been published peer reviews, but in the mean time, TODAY they are (in some cases) completely “curing a problem that no one else can.” Sorry, it is a fact, not a claim. There are hundreds of doctors and scientist and thousands of parents who will tell you that these treatments work. When will the mainstream begin to stop calling it quackery? I’m just begging the skeptics to read the books I mentioned above or attend a DAN conference with an open mind. Listen in. Ask questions. These are not “anecdotes” – these are real children who are getting, to many different degrees, better. Period. Another frustrating issue is how the mainstream discounts the significance of food allergies and parasites in not only autism but also a variety of other problems like asthma, allergies, etc. Do a little research on celiac disease. Totally under-diagnosed.
It has been said that all truth passes through three stages: first it is ridiculed, second it is violently opposed, and third it is accepted as self-evident. We argue that the vaccine-autism link is in the second phase. It took us a while to truly “realize” that smoking is bad. It took us a while to recognize global warming. And it is taking us a while to admit there’s a vaccine-autism link. It is being violently opposed by the vaccine makers, I can guarantee you that. If I am wrong, I swear I’ll be the first to admit it and apologize, but somebody’s gonna have to tell me where the vaccine-strain measles in my son’s gut came from…. DAN cetainly does not have all the answeres, but I believe they are headed inthe right direction. We need to build a community of cooperation.
I found out one reason why there might not be any published peer reviews: people at the DAN conference said that often times, once they tell the parents about the treatment options, they decide not to participate in a double blind placebo (whatever it is called, however it works) study and begin seaching for a DAN doctor to start treatements ASAP.
I met a little girl a bit over a year ago, who was very autistic, who had just began treatment with Dr Usman. I saw this same girl two days ago, and the change is nothing short of extrodinary. Most people, professional or otherwise would now have no idea that the girl was ever autistic.
So you guys can keep bitchin and moaning about all of these “quacks” all you like, but in the years to come, there will be a growing number of recovered children to the point it will be irrefutable.
And at that time, when you finally realise how wrong you were, I want you to think about the number of poor scared parents you mislead into not seeking the best help they could for their children.
Michelle
can I ask you, as I ask all DAN defenders who post in this discussion, do you have answers to the questions I posted in the orginal article
Even if I was a true believer in biomedical cures for autism, before I ever invited Dr Usman onto a conference platform, I would want to know
Did she use Deferoxamine on Tariq? Was she monitoring his iron levels?
Did she specify CALCIUM disodium EDTA to Kerry when she referred Tariq?
If so, would he not have told her that he never used it and did not have it in stock?
Did she understand at the time how different the two forms of EDTA are?
Did she object when Kerry was granted DAN! status AFTER he killed Tariq?
I have done enough reading to realize that mike wants an answer to his questions, so Mike, contact Dr. Usman and ask. As for the rest of your arguement, try doing the research to quantify your arguements AGAINST chelation as the scientific proof shown over and over in other cases verify that with chelation (using the correct calcium disodium EDTA or other appropriate chelators) Autism is able to be “cured” (I prefer to say “fixed” as it is just correcting something other uninformed practitioners of medicine most likely caused in the administration of mercury into a child whose body could not “get rid of it” like other children could). I appreciate and applaud the research done by DAN docs and the courage that the parents of the children that are treated by them exemplify by letting their little ones be on the frontline of a treatment that is only possibly going to work… but possibly is much better than the alternative. And anything that gets kids off the drug addiction that is formed by a diagnosis of ADD or ADHD is a definite plus in the mind of someone who is seeing the youth of this generation vs previous ones…
Glen Trahan
visit Research Autism. There you will read that, “The proponents of chelation claim that it is suitable for most children with autism because ‘most children with autism suffer from mercury/metal toxicity.’ (DAN!, 1999).However this claim is not accepted by the majority of academic researchers. “
Before I would submit any child to a DAN treatment I would want answers to these questions.
1. Is the research published in a decent journal like JADD or Pediatriatrics or JAMA?
2. has the research been replicated by a non DAN research team?
3. Is the treatment sanctioned by the relevant medical authorities in that country?
4. Is the doctor licenced to provide that treatment?
If the answer to any of those questions is, “No,” rather than applaud their courage I would be tempted to criticize their foolhardiness. My criticism would only be tempered by the knowledge that parents are bombarded with so much misinformation and media hype about autism that it is little wonder that so many of them fall for DAN’s quackery.
It’s very amusing that some people believe that there is a grand scheme by DAN doctors to fool desperate parents with autistic children. The mystery is, if its such a quackery, why does it exist until now? Why do governments allow them to exist, why not arrest them all? The reason is, however blindly some of you may see it, there is scientific basis,research and results with the DAN “evolving” protocol. I’d rather talk to them than doctors who do nothing. These people are taking the lead with the help of parents, because as we know, no new discoveries and milestones were achieved without courageous people looking for solutions. Remember doctors and scientists being ridiculed to give you your now “accepted” modern day cure, gentlemen
Also, it is very amusing why the sad fate of Tariq is being peddled as the evil of DAN, while hundreds of non-DAN doctors kill hundreds if not thousands of patient every year worldwide.
Blue,
There is no more a grand scheme by DAN! to fool parents than there is a conspiracy by the CDC and the FDA in the thrall of big pharma to fool people. There is bad science and good science. Show me the good science that supports the DAN! protocols.
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