Autism 'cures' may be deadly -

Alternative treatments for autism - some of them potentially deadly - are growing more pervasive and run the gamut from dietary supplements to prescribing a potentially dangerous diabetes drug, which now ...

[Mandi Rodwell UK]

You statement that chelaton therapy involves EDTA is misleading, that type of therapy is used largely for adults with heart disease. Children with autism largely use oral DMSA, an FDA approved drug.

http://www.autism.com/treatable/form34qr.htm

The above link gives details of over 25,000 parent responses - surely we can't all be wrong???

[Dogen3]

Very poor and biased artical written by someone without enough background knowledge to question their sources appropriately. Many of these "offbeat" therapies have been show to be effective in large samples of children with exceptionally low risk. "Alternative" therapies have a lower risk of side effects than most prescription drugs.

Fact: More people will die of asprin this month than will die this YEAR of all the more popular alternate autism therapies combined.

[Julie]

As a parent, it IS difficult. You want to do everything you can. I wish we could even try the diet with my son, but with our family dynamics, trying to stick to the diet would be more difficult than coping with the autism!!! I have no control over what my son eats during his father's 50% of the time with him. Furthermore, people have told me their children were improved from these diets. Frankly, I don't see it. I meet children whose parents have gone to great lengths to have special diets, but those children are receiving conventional, ABA-type therapies at the same time, and I see kids who've made the same progress as my son who has not been on the diet, but has had the therapies. Now chelation -- why would a parent shoot their kid full of a dangerous chemical with the hopes of removing another? I've also met adults who do the autism speaking circuits who claim to be "recovered" because of some oddball treatment or another. They do function in society, they do so with lots of help from family. I believe that the gangs they have made towards "recovery" have to do in great part because of the family's great involvement, love, and care. I will continue to provide my son with great amounts of involvement, love, and care, but I'm NOT going to be subjecting him to dangerous "treatments" by quacks cashing in.

[Julie]

Dogen3 wrote:

Fact: More people will die of asprin this month than will die this YEAR of all the more popular alternate autism therapies combined.

That's just plain silly reasoning. MORE PEOPLE TAKE ASPIRIN ON A DAILY BASIS THAN THERE ARE PEOPLE WITH AUTISM!

[Julie]

Sorry, in my previous post, "gangs" should be "gains."

[FDA_is_lost]

The GFCF diet was a blessing to my child. These doctors do not know what they are talking about. It is a sad same when the medical profession is so out of touch with reality.

[Cabby821]

What this boils down to, is parents of autistic children are so desperate that when they hear someone has come up with a cure or treatment for autism, they jump at it.

Snake oil salesmen at best.

Until the scientific community as a whole, can agree on the one true cause of autism, there is no cure for it.

[allikv]

Cabby821 wrote:

What this boils down to, is parents of autistic children are so desperate that when they hear someone has come up with a cure or treatment for autism, they jump at it.
Snake oil salesmen at best.
Until the scientific community as a whole, can agree on the one true cause of autism, there is no cure for it.

I would only assume you do not understand what each of these treatments entails. You sound closed minded. My son receives excellent treatment by DAN doctors that specialize in Autism. Each suggested treatment is discussed, agreed upon and re-evaulated on a monthly basis. No cure, indeed, since each child may react differently. Desparate?? You bet! Our society has poisoned the air and water and our children. Explain to me how my child has high amounts of lead, mercury and aluminum being excreted after Chelation, yet hair samples and blood work did not show any traces BEFORE. Think before you assume we all just JUMP into a treatment.

[Dogen3]

Julie wrote:

As a parent, it IS difficult. You want to do everything you can. I wish we could even try the diet with my son, but with our family dynamics, trying to stick to the diet would be more difficult than coping with the autism!!! I have no control over what my son eats during his father's 50% of the time with him. Furthermore, people have told me their children were improved from these diets. Frankly, I don't see it. I meet children whose parents have gone to great lengths to have special diets, but those children are receiving conventional, ABA-type therapies at the same time, and I see kids who've made the same progress as my son who has not been on the diet, but has had the therapies. Now chelation -- why would a parent shoot their kid full of a dangerous chemical with the hopes of removing another? I've also met adults who do the autism speaking circuits who claim to be "recovered" because of some oddball treatment or another. They do function in society, they do so with lots of help from family. I believe that the gangs they have made towards "recovery" have to do in great part because of the family's great involvement, love, and care. I will continue to provide my son with great amounts of involvement, love, and care, but I'm NOT going to be subjecting him to dangerous "treatments" by quacks cashing in.

I think you have been exposed to a lot of misleading information. Chelation is extreemly safe if done under the care of a reasonably compatant doctor. Our bodies natually chelate heavy metals out. But for whatever reason many autistic kids seem to be less able to do this than 'normal' kids (for whatever reason... I am not going to use the 'V' word because that is not only issue). The thing about chelation is that it works. Over 80% of the parents observed improvements in their children during chelation. This is better than ANY other treatment currently in use. You can argue why till the cows come home, but it is hard to argue with what works.

Many of the other treatments for Autism show up as being highly useful. We may not understand autism well enough to know why they work, but vitamin B12, B6 in significate dosages has also been shown to have a noticable improvement in the communication skills and behavior of autist kids and adults. Do I know why... not for a fact,(but the digestive disorders that are so often co-morbid with autism may be at the epicenter) but it usually works and it is 100% safe.

Finally, "recovery" is a relative term. As it is used in disabilities of this type it usually means that they would not meet the diagnostic criteria if they were initally evaluated today. Obviously the underlying factors have not gone away, but they can no longer be distinguished under the criteria that would have given them the diagnosis to begin with.

[Dogen3]

Julie wrote:

<quoted text>
That's just plain silly reasoning. MORE PEOPLE TAKE ASPIRIN ON A DAILY BASIS THAN THERE ARE PEOPLE WITH AUTISM!

Of course. I was being silly with my example. My point is that chelation is relatively very safe. Generally the course of treatment is oral and has no observable side effects. Potassium levels need to be monitored, however.

[mysticrose]

There are a number of factual errors in this article. First, a CDC investigation determined that the boy in Pittsburg was killed by the administration of the wrong chelating agent: Disodium EDTA rather than Calcium Disodium EDTA. IOW, he wasn't killed by chelation proper, but by physician error. See:

CDC says 2 deaths caused by chelation drug errors
http://www.post-gazette.com/pg/06062/664032.s...

Also, Actos has not been showed to have caused heart failure in adults. Some studies on a similar drug, Avandia, seem to indicate a slighly increased risk of heart failure for those who take it. However, they have not yet been peer-reviewed and the FDA did not consider them conclusive enough to ban the drug. So they required the "black box" label instead and, to be on the safe side, required the same of Actos even though the studies in question did not involve Actos.

[Dogen3]

allikv wrote:

<quoted text>
I would only assume you do not understand what each of these treatments entails. You sound closed minded. My son receives excellent treatment by DAN doctors that specialize in Autism. Each suggested treatment is discussed, agreed upon and re-evaulated on a monthly basis. No cure, indeed, since each child may react differently. Desparate?? You bet! Our society has poisoned the air and water and our children. Explain to me how my child has high amounts of lead, mercury and aluminum being excreted after Chelation, yet hair samples and blood work did not show any traces BEFORE. Think before you assume we all just JUMP into a treatment.

Conventional medical practice is years behind the research and the research is often years behind the most most advanced medical practices which are usually done "off label". We do not understand autism yet. But we have good research showing these treatment are effective.

To quote the buddha:
A man went to the Buddha insisting on answers to these questions, but the Buddha instead put a question to him: "If you were shot by a poison arrow, and a doctor was summoned to extract it, what would you do? Would you ask such questions as who shot the arrow, from which tribe did he come, who made the arrow, who made the poison, etc., or would you have the doctor immediately pull out the arrow?"

"Of course," replied the man, "I would have the arrow pulled out as quickly as possible." The Buddha concluded, "That is wise, for the task before us is the solving of life's problems; until the problems are solved, these questions are of secondary importance."

[Cabby821]

allikv wrote:

<quoted text>
I would only assume you do not understand what each of these treatments entails. You sound closed minded. My son receives excellent treatment by DAN doctors that specialize in Autism. Each suggested treatment is discussed, agreed upon and re-evaulated on a monthly basis. No cure, indeed, since each child may react differently. Desparate?? You bet! Our society has poisoned the air and water and our children. Explain to me how my child has high amounts of lead, mercury and aluminum being excreted after Chelation, yet hair samples and blood work did not show any traces BEFORE. Think before you assume we all just JUMP into a treatment.

I make no assumption, I speak fact.

Since no one can say with 100% fact what even causes autism, how can any treatment be devised for it?

They've been guessing at this since long before they even named it autism.

If something seems to be working for your child, consider yourself one of the lucky ones.

It's still a lot of guess work in white coats. When the scientific, and medical communities come to the one and only agreed upon cause of autism, there isn't a lot of hope for affective treatments, and damn sure a long way from a cure.

My stepson is a grade 2 high functioning autistic. Was diagnosed at 3 1/2.

Haven't given up hope, but not buying the snake oil either!

[Doug C]

After our son was diagnosed with ASD in November 2006 at the age of 27 months, we rapidly introduced the GFCF diet. In his case, the results have been remarkable. We have recently introduced supplements, including zinc, to counter the imbalance of copper and other heavy metals in his system. We're clearly seeing a renewed jump in development. This treatment, along with 35 hours of week of ABA and speech therapy, is allowing my son to make strides that are, well, miraculous.

We find this approach much more productive than the Autism Speaks philosophy, which seems to revolve around evoking pity from the masses by presenting autism as a hopeless disease that wrecks families. That approach might raise money, but it won't raise spirits.

[bob]

Describing an episode of malpractice, giving a person the WRONG medication, as being a potential risk of chelation is ridiculously misleading.

[John Best]

Eric Gould,
What are you talking about!!. Only an idiot would use EDTA to treat autism. People who chelate use DMSA or DMPS but the only important chelator is ALA since that is the only one that gets mercury out of the brain.
A kid died with the wrong kind of EDTA, one kid. You're not telling the truth about chelation and I think you know that. Please stop your moronic misrepresentation of chelation. There are too many of us who have become experts at it who will point out that you are a charlatan.

[John Best]

Hey Hack,
The scientific community did agree that mercury in vaccines caused the autism epidemic in 2000 at Simpsonwood. Then the scientists who work for drug companies decided to try to conceal the information. Look up Simpsonwood so you can know what you're talking about instead of showing your ignorance.

[Dogen3]

Cabby821 wrote:

<quoted text>
I make no assumption, I speak fact.
Since no one can say with 100% fact what even causes autism, how can any treatment be devised for it?
They've been guessing at this since long before they even named it autism.

I guess we should give up on treating alzheimers, cancer, schizophrenia......etc. as well. It is all worthless.

[Dogen3]

Doug C wrote:

We find this approach much more productive than the Autism Speaks philosophy, which seems to revolve around evoking pity from the masses by presenting autism as a hopeless disease that wrecks families. That approach might raise money, but it won't raise spirits.

Yes, Autism speaks should be called Autism Whines. Glad to hear about another child doing well with good treatment. The combination of 'traditional' treatments like ABA with the DAN type of approach seems to be excellent.

Bottom line is that parents who get educated and work closely with an open minded doctor can get positive results for their kids. Three years ago I was wondering if my son would end up in an institution. Today I am wondering if he will be able to succeed in college. When people laugh at the DAN type of treatments I laugh back, unless they happen to be parents of an autistic child.... then i cry.

[oiram ifnab]

John Best wrote:

Hey Hack,
The scientific community did agree that mercury in vaccines caused the autism epidemic in 2000 at Simpsonwood. Then the scientists who work for drug companies decided to try to conceal the information. Look up Simpsonwood so you can know what you're talking about instead of showing your ignorance.

Yeah, here is an excellent link:
http://skeptico.blogs.com/skeptico/2005/06/ro...