Parent's of Autistic child suing over death...

[totoro]

I know this happened in 2005, but they are now suing. I just thought the whole thing was interesting. I know Chelation has been discussed before, I have researched it a bit. Neither one of my children have an Autism diagnosis, but K has had the Pervasive Developmental Disorder (PDD)-not otherwise specified diagnosis back and forth, and N seems more so. So I always try to stay informed. Plus I believe most of the treatments/behavior mods, apply to most of our kids!

This is scary... It made me think what if K died from a medication she was taking off label? I could see the people/media going crazy with the "Well why were they giving their child those medications?" "Those medications weren't for kids" "They should have known better"

I know it is a different scenerio, but it still made me wonder? I have no idea what kind of parents these people were?

http://www.autismvox.com/parents-of-boy-who-died-after-chelation-sue-doctor-and-apothecure/

 

[Stella Johnson]

Very sad for the family.

What exactly are Chelation treatments? This is the first I have heard of this.

Steph

 

[Marguerite]

Chelation therapy is recommended in a number of conditions. It's generally only recommended in cases of genuine, identified metal poisoning or by 'complementary medicine' practitioners who specialise in 'environmental medicine' and claim thereby to treat a large number of aggregations of symptoms which can also be found in cases of metal toxicity.

The name "chelation" refers to the chemical reactions that occur with heavy metals and some chemicals known to bind to these chemicals and take them out of solution. It's supposed to work in the body by putting stuff into the bloodstream which will bind with the toxins and take them out of circulation. It's not without risks, because such complex aggregates which result from this sort of therapy then also need to be cleaned from the system. Also, it really should be done by someone who really knows what they are doing, under controlled conditions, and by someone who really knows what they are doing.

The practice of medicine is open to abuse - while some doctors really want to help, others are out to make money. And what makes the best money? Non-fatal, vague, non-specific conditions which can be 'sold' a 'treatment' which MAY help, and shouldn't do any harm, except to the patient's wallet. Also, the sort of patients attracted to this sort of practitioner are those who feel the medical profession has ignored them or failed to heal them. In a (Western) world with increasingly ageing population, the need for good management of those with long-term chronic illness is increasing, just as health care is trending towards only being interested in sorting out acute cases. A lot of these long-term patients are justifiably frustrated at the failure of a health system to heal them. We live in Gen Y times, when we expect everything on a plate. We snap our fingers, throw down a piece of plastic and buy anything we want - instant gratification. But this has not been able to reach a lot of chronic illnesses. Those who want to be able to buy the best cure that money can buy will be vulnerable to those medicos who claim to be able to cure anything, providing you can pay for it.

Some of these 'complimentary medicine' practitioners really believe they can help. They also give the patients more time and will listen, which alone can bring about some improvement. "At last I've found a doctor who gives me the time I need, who will listen to me." Patients are more likely to trust such a doctor and to believe he has altruistic motives. And a doctor who really wants to help may genuinely believe that he can do it, just by reading up on possible treatment options and setting them up himself. But has he really done his homework? Is he sufficiently qualified to do this? Has he checked dosages? Has he done all the bloodwork necessary to justify what is really a risky procedure?

Chronically ill patients are vulnerable. Some doctors are also vulnerable - they went into medicine as a career, to do their bit in eliminating all illness. Any degree of emotional instability is likely to be aggravated, in a practising doctor, simply due to the strain and other problems of the job. Some become megalomaniac, convinced they have the key to the panacea for all vague aches and pains. Others begin to justify anything they do, in order to produce some report of improvement in the patient. Again, these doctors are not the majority, but are often the ones to adopt a new idea without checking it thoroughly first. As a result, they are the ones we hear about. It's the fanatics in ANYTHING that really stick in your mind - I've had a few of these doctors try to sell this and similar ideas to me, so I do know what I'm talking about. Sorry if this seems critical of all doctors who are interested in complementary medicine - I'm only talking of those who give the rest of you a bad name.

Chelation, when used correctly in cases of heavy metal poisoning, is still a recognised treatment. But there are still too many unproven theories about this or that, and these do not provide sufficient justification to embark on a risky procedure. You can watch chelation in a test tube, it's fascinating. But to do it in a person's blood stream - you need a darn good reason to risk it.

Chelation should only be carried out in cases of known heavy metal poisoning, where the type AND quantity is known. To simply say to a patient, "You seem tired, you're not able to concentrate properly, your joints and muscles are aching, you have dark rings under your eyes - these are all symptoms of heavy metal poisoning and I'm going to administer EDTA to you via an intravenous drip," is medically irresponsible. The patient may simply have flu.
But to say to a patient, "I have your blood test results back, your known exposure to lead because you were restoring an old house and sanding back the old paint which turned out to have lead in it, and you inhaled it - your blood levels of lead three times the safe level and you need to have chelation treatment to try and get these levels down before your health is damaged any further," IS responsible. The doctor should then say, "This is much safer than it used to be but is still not without risks. The risks are... and the risks of not having the treatment are... You need to make up your own mind."

Some people believe that autism is connected to mercury in childhood immunisations. This is still open to debate, but if for any reason a parent suspects their child has high levels of heavy metals, AND THE BLOOD TESTS DO NOT SHOW IT, t hen any heavy metal damage has been done. Chelation, when there is no heavy metal present any more (as evidenced by the blood test results showing no metal levels) WILL DO NOTHING.

It's like expecting the summer thaw will instantly heal the leg that was broken, slipping on the ice. Sorry, a different process has to happen now. It's called, "healing" and it takes time.

I've known a lot of patients who have had various forms of chelation therapy. I've talked to them before and after. Many of them were no better, when checked months later. I've also talked to a number of doctors, both sceptics and enthusiasts. I've attended conferences and nothing has convinced me to adopt a "let's pour it in to the patient and see what happens" approach.

We had a TV program in Australia the other night, discussing the research on the Dore program. They were claiming that the research done showed that this program led to an increase in literacy skills for children on a trial. But no controls were in place. When you assess children over a period of 18 months or more, they get older and wiser, as well as more skilled in literacy, purely from tuition. There actually was no work done to show that the program led to an improvement in children, above and beyond what improvement would be shown anyway. It would be like saying that the program caused the children's feet to grow, because by the time the trial was over, the children almost all had needed to buy new shoes, having outgrown the old ones. Or that it caused the children to grow taller - as children are wont to do anyway.

I'm not equating chelation with Dore, just using the TV show I saw as an example. Dore is an entirely different topic.

Here is a Wikipedia link for info on the topic.
http://en.wikipedia.org/wiki/Chelation_therapy

Marg

 

[SRL]

I have a friend with a chronic illness that hasn't responded well to traditional medical treatments and as she's pursued the natural treatments route I've been astonished at how largely unregulated the area is. I have tried to keep an open mind given that the traditional medical route has given her little help but some of what I've heard has quite frankly scared me. She's had what in my opinion amount to diagnostics and medical treatments from practioners who don't have medical backgrounds. (ie diagnosing virtually any medical condition from bacterial/virtually infection, heavy metals, thyroid conditions and endometriosis totally through means such as handwriting analysis?) She's also purchased some products that were questionable--most recently some very pricey herbal capsules packaged in a regular Ziploc bag with all packaging in a foreign language.

My friend a good head on her shoulders and does her research and usually involves her regular doctor to monitor blood levels, etc. but it wouldn't happen if she didn't take the initiative. She's also seen a lot of people out there "diagnosing" who are pushing their products as the cure.

I don't want to bash chelation or any natural treatments when used wisely but it seems like this area has just exploded in recent years, leaving a lot of room for bad practices.

 

[BusynMember]

Without getting too much into it, I'm in a group for parents of autistic kids and it shocks me that so many have tried "unauthorized" treatments. Their kids are no better off than mine, in fact mine is better than most of the kids there. When parents are desperate there are doctors or pseudo-doctors who will try anything, and charge a lot for it. There is no known cause of autism, and I wouldn't try any methods on my son that aren't proven safe. I know grown Aspergers kids who hated the treatments that this kid died from. They did not feel it helped them. I feel for desperate parents and hate the professionals who take advantage of them. My own experience (which is just MINE) is that the kids who go to DAN! doctors do no better or worse than those who don't. Autistic kids tend to improve regardless, as long as they get the proper school/community interventions. Unlike many disorders, autistic kids can and usually do get better as they get older, and, in my opinion only, some "alternative" doctors take credit for natural improvements. Unfortunately, in my opinion, DAN! doctors tout a cure for autism. I've yet to see a child cured by a DAN! doctor. In our autism group it's about 50/50 on who does diets, vitamins, whatever...and who doesn't. I just don't see a difference in the kids. Anyways, I feel for the parents...we are brought up to trust people who call themselves doctors, and so often they let us down...I think it's a good idea to go to professionals who are better policed. They aren't perfect, but they have to answer to somebody. JMO

 

[Marguerite]

I think a big part of the problem is parents are desperate. We also tend to blame ourselves. I have some scientific and quasi-medical training, and even with that, I still get caught up in, "Was it the medication I had to take while I was pregnant?" I've been constantly reassured otherwise - a lot of women have to take the same stuff to prevent labour and I've been told that no significant correlation exists between this medication and the incidence of autism in the children born subsequently, but still I wonder.

For parents with neither the scientific understanding nor the ability to think in scientific terms, a doctor promising answers and at least some level of improvement must seem like a saint from heaven. Then there is the emotional blackmail also often thrown into the mix - "I know it's expensive, but what price can you put on your child's welfare? Surely it's worth mortgaging your property? Or don't you want your child to be well?"

I'm older and more cynical these days. I'm less polite with these charlatans than I used to be. That's not to say it's all bunkum or a waste of time, but there are certain rules to keep in mind whenever you're checking out anything "on the fringe" -

1) Ask for evidence of research. You don't have to read the whole paper, just the abstract or the summary. But the whole paper has to be available to you because it contains vital information. You look for:
a) who did the research (ie do they also happen to work for the company trying to sell this product?) and has this work been independently replicated (research is not valid until some completely different group, with no ties to the first group, manages to duplicate the results
b) who paid for it (subjects in a research study should never have to pay to be in a research study) because again, if the company marketing the product also paid for the research, often they have a good reason to only accept results that back up their product
c) where it was published, and when (reputable scientific journals have very high standards - if the paper was accepted by a mainstream scientific journal, chances are it has credibility)

Then go and Google for similar studies, because the company promoting the product has a vested interest in not showing you research or discussion that says the product is no good. They only show you the stuff that makes them look good.

2) Do they rely on anecdotal evidence, or statements from individuals (testimonies) to promote the product? In Australia it is now illegal for a company claiming a product to be therapeutic, to advertise using testimonials. It's simply too easy to manipulate, or even to fabricate. Proper studies should always be able to be independently verified. How can you check up on a testimony? Will they give you the phone numbers of these people claiming it to be a wonderful product? Will they also tell you how much, if anything, they paid for this glowing reference?
The product could be sent out to 100 people and of that number, there will always be some who improve anyway (placebo effect). usually it's about 10-15%. If they get letters from 50 people, with 45 of those letters saying, "Your product was useless, I want my money back," and the remaining 5 saying, "yeah, it was great, I feel much better now," which letters do you think they will use in their advertising?

The trouble is (and like MWM, I've seen this nasty tactic), practitioners whose main motivation is to sign up customers to something expensive and potentially lucrative, do not take kindly to any potential threat to their intended income. They will use every dirty trick in the book. Unless, of course, they already have more customers than they can cope with and have no fear of losing them by you exposing them as frauds. If they have any fear there, though, they will fight dirty. So if they get upset with you for asking for what amounts to references, don't trust them. No reputable doctor or scientist would get upset; they welcome the scrutiny because they know they can stand up to it. Coming through such scrutiny with flying colours is a gilt-edged endorsement and would be in their interests.
So if asking, "please can I read some research publications on this topic?" or "Where have you published your results?" brings their anger down on you, be suspicious. Responses I have seen include, "We don't discuss the science with patients, you need to be a qualified medical practitioner to have the training to understand it," to "How dare you question me? Are you calling me a liar? A fraud? If you feel that way then I don't think I can help you. You can take your child and go elsewhere, perhaps to the conservative medical fraternity who are all out to get me and who have clearly been SOooo much help to you until now [loads of sarcasm] ... your scepticism means you don't deserve my generous offer to treat your child."

One cute little trick to watch out for - a research team who shall remain nameless, that I had dealings with in terms of their "breakthrough discovery that was likely to get them a Nobel Prize" and who had coverage on some Australian mainstream science documentary TV shows, had an abstract of their research distributed to the media. We also got a copy for our publication, they wanted me to publish it. But I publish nothing scientific without citation. I asked for the citation (ie where and when was it published?) and found that it NEVER had been published. In fact, the paper it was supposed to be an abstract of had not even been written. Scientifically, this is like a final year high school student being asked in his final exams to write a dissertation on Shakespeare, and handing in a drawing of a stick figure in green crayon.
But these guys had promised a cure within five years (this was fifteen years ago) - and those who were desperate for a cure were furious with me for daring to ask embarrassing questions. Why were the people furious? Because these 'scientists' had gone to their 'clients' - the desperate people pouring money into non-existent research - and told them that my scepticism (and that of others in my team) was threatening their enthusiasm for the project.

Scientific confidence tricksters, especially those apparently backed by reputable, respectable educational and medical institutions, do the worst damage of all.

When you are a parent, you can get desperate. But always try and stay in touch with reality and commonsense. Something may actually be on the fringe, and legitimate. But look into it for yourself and make an intelligent, educated decision. Don't just believe every promise you hear. As the French used to say in crime novels, "Cherchez la femme," meaning "Look for the woman, there you will find the motive," in cases like those peddling 'unusual' medical treatments, look for the almighty dollar. Find the driving force, the motivation, and understand it, before you too get ripped off both financially, personally and maybe even health-wise. (I'm going to have to write a book about this story, but it would have to be satire - it's simply unbelievable, and I had access to some white-hot inside info that is just too outrageous to ever be considered likely).

Become your own best scientific advisor. Just as we become experts in parenting, learn how to think critically and impartially, like a scientist. Learn how to understand as much as you can. And if someone promises you the earth, get it in writing with a money-back guarantee.

Marg