Please keep us informed about this story, Darkcode. The doctor and the parents must be held fully accountable for this. They need to be "made an example of" or else more children will die.
This chelation madness must be stopped. If this application of chelation has not been FDA approved it should be illegal to administer or authorise it. It is a sad fact that the off-label use of prescription drugs is commonplace, and doctors don't seem to be held accountable for doing it. In my opinion this use for chelation must also be an off-label application of a drug. What's the point of having an FDA if their rules mean nothing to doctors?
They've essentially poisoned a child to death in order to make themselves feel better about how different they are. I agree that this should be made an example - if the media will listen.
What kind of parent would trust an ear, nose and throat specialist to do a dangerous intra-venous medical procedure on their own child?
Quote from article
He said that, in 2000, perhaps a dozen autistic children were treated with chelation therapy. This year, it's more than 10,000.
If this is true then there have been 10,000 kids given a medical treatment that has not been approved by the FDA. Sounds like a scandal to me. I guess "anything goes" in the USA.
Thanks for the info, SassafrasTea. none of the info about the doctor surpriesed me, as I have little regard for "alternative therapies" and the practitioners who sell them.
Quote from Schaffer Report
The child apparently had an allergic reaction. The mother says her son
was doing very well as a result of chelation up until then. She said that the
results were so good that if she had to do over, she would still do some kind of
chelation with her son.
If the child had such a dramatic and disastrous allergic reaction to the chelation chemical, I find it very hard to believe there were no previous allergic reactions to the drug during the previous chelation "treatments" that the mother said were very beneficial to the boy. It appears to me that she must be conveniently not mentioning previous adverse side effects of chelation, or perhaps she was too stupid or disinterested to notice such reactions.
Quote from Schaffer Report The child apparently had an allergic reaction.
The mother says her son was doing very well as a result of chelation up until then.
She said that the results were so good that if she had to do over, she would still do some kind of chelation with her son.
This is like some horrible joke, 'everything was alright until they died'.
I just cannot imagine what these people are thinking.
It's possible that the mother has been misquoted. The comments attributed to her don't have any regretful or remorseful or apologetic emotional tone to them.
Good point, is a quote from Schafer reliable at all?
I hope the important information in the above quote gets widely disseminated around the internet, because any parent or person considering chelation "therapy" needs to know about it. Thanks for the info Kev.
We do have the website Chatautism,
http://www.chatautism.com for NT parents, parents on the spectrum, and adults on the spectrum.
It is now remade after being hacked some months ago.
We also have the chatautism network of chatrooms, we do get parents there seeking advice, and we help as much as we can.
Hi
One of the things that lacks most for autism is support for parents(and they are seldom the social elite),
HA
that is a joke. NT parents usually run the show even when they have advocates for high function autistics in their name. They have token aspies in their ranks but none in a position of leadership. They downtalk us especially to politicla contacts. if we dont have the right views they "say unpridectable" just to smear us . well me in particular
I cry no tears for thee
TheASMan, you meet some parents, they are the vocal, well known ones, but the vast majority do not have any input into the running of services.
Most parents struggle to get access to services, and when they look to unofficial sources face the onslaught of 'cures, treatments, therapies' adverts.
It is better to give as much information as possible that is helpful, honest, and realistic.
Matt wrote
could your advice to Autistic childrens parents help them cope better and avoid misinformed decision making for vulnerable kids
What about a sharing of autistic typical perspectives with NT's that will help improve often strained communications between the autistic child and their parents .
My answer to the question would be YES! YES! YES! but I could give you a dozen possible reasons why this doesn't happen.
Is it possible that any aspie who is articulate enough (verbally or in print) to give advice or perspectives that is easy to read and understand would not be recognised as a "genuine autistic" by NT parents simply by virtue of their ability to express themself? I think this could be true. It is a "Catch 22" situation. I have family members who don't believe I'm aspie, they just think I have a bad attitude.
Do NT parents really genuinely want to find out about our point of view or is this just a thing that they say to make themselves appear tolerant and kind to other NTs? Most NTs who I know are at least 50% genuine phoneys. We are the kind of people who many NTs just don't like, but no one is willing to face this fact. These NTs don't want to face the possibility that their child might grow up to be a person that they can respect but not like much as a person, so there's heaps of denial. One of my parents still treats me as though I'm some person that I never was and never will be, and I'm almost middle-aged.
"Do NT parents really genuinely want to find out about our point of view or is this just a thing that they say to make themselves appear tolerant and kind to other NTs?"
Some of them do, some of them don't.
There are forums where being an adult on the spectrum will get your posts removed very quickly, whereas some will genuinely ask for advice.
When you say set up a system, how do you mean?
People could spend a long time, and a lot of money, to set some kind of thing up, and parents may not like it and not use it.
Matt, there is a communication void between us, I still have no idea what you are talking about.
"Your right about the parents having to want the service, and without this demand the idea will never get off the ground, however as a parent to an autistic child and having spent time with other parents and on other autistic web sites(and having suffered the health service approach to educating me about autism), I'm sure that even in the occidental world there is a huge opportunity to help people who would jump at the information to try and help their kids communicate and live a happy life."
What would the service be?
How would it work?
There are 100s of autism websites out there offering information already, we have one called chatautism, and it has the autism encyclopedia and it is not well used.