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ksasnic

In the news again - sadly

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I found this and wondered at the desperation of some to find a 'cure' . Has there been anyone who found this chelation therapy working ? Also noticed another story that was dated the 9th Jan and thought hmmmm to anyway what are your thoughts on this treatment.. Also my thoughts go out to the young boys parents who thought they were helping him..

 

Autism boy dies after alternative therapy

By Catherine Elsworth in Los Angeles and Richard Savill

(Filed: 26/08/2005)

 

A five-year-old boy with autism has died in America after flying from Britain for a controversial medical treatment for the neurological and developmental disorder.

Abubakar Tariq Nadama, whose father is a doctor, died on Tuesday after receiving his third round of chelation therapy, an intravenous treatment designed to remove heavy metals from the body.

 

The county coroner's office said the boy went into cardiac arrest at the Advanced Integrative Medicine Centre in Portersville, a suburb of Pittsburgh, Pennsylvania. A police inquiry has begun.

 

Abubakar had moved with his mother, sister aged 11, and grandparents in the spring to have treatment while his father remained at work in England.

 

Marwa Nadama, the boy's mother, said she did not blame the therapy for her son's death but was awaiting the results of the autopsy. Speaking yesterday from Monroeville, where she had been staying, she said it was "not a good time" to speak.

 

The boy's father, Dr Rufai Nadama, a specialist registrar in respiratory medicine who works for Plymouth Hospitals NHS Trust, travelled to America, colleagues said.

 

Neighbours of the family in the Somerset village of Batheaston said the boy's parents, who are believed to be from Nigeria, had been determined to find treatment for their son.

 

"Carers came in three times a day to look after him," said Brenda Drewett, 69, an auxiliary nurse. "The boy's mother was very concerned that he should get some treatment. They found out that treatment was available in America and within no time they were gone."

 

Norman Myers, a retired marine salesman, said: "The boy was their life and soul. Everything in their house they made environmentally friendly, including stripped wood and the paintwork.

 

"Evidently this was important, as was his diet." He said that Abubakar had been "an active child and a beautiful one to look at. He was vigorous and always running about the garden."

 

Chelation therapy involves an intravenous injection of a synthetic amino acid called ethylene diamine tetra-acetic acid (EDTA) that latches on to heavy metals in the body and then is passed out through the urine.

 

EDTA has been approved by the Food and Drug Administration, the body that approves medicines for public use in the United States, but for treatment of only acute heavy-metal poisoning diagnosed with blood tests.

 

Some parents of autistic children, however, believe the therapy can help by purging toxic metals, thought by some to be a cause of the disorder.

 

Reports of significant improvements in children following the treatment have led to a large increase in those seeking the therapy.

 

"There are those in the alternative medical field who feel that mercury and other toxic elements contribute to autistic disorder, and that their removal would be a pathway to reducing autism," said Dr Jonathan Collin, from Washington State, who specialises in alternative medicine and has written on chelation therapy.

 

But critics say there is insufficient evidence to link autism to metal toxicity and call the procedure risky.

 

Howard Carpenter, of the Advisory Board on Autism-Related Disorders, said: "Parents of children with autism are desperate. Some are willing to try anything."

 

Stephen Barrett, a retired psychiatrist and founder of the Quackwatch website, told the Pittsburgh Tribune-Review: "Many doctors who treat children for autism claim they are suffering from mercury or lead toxicity. There is not sufficient evidence that autism is caused by mercury or lead toxicity."

 

Larry Barr, Butler County's deputy coroner, said that when Abubakar went into cardiac arrest, Dr Roy Kerry, who was treating him, and his staff attempted resuscitation.

 

He was then transferred to the Butler Memorial Hospital, near Pittsburgh, where he died. An autopsy has been conducted but the results will not be known for several weeks.

 

"From my conversation with them [the doctor's staff] he had some kind of lead in his system, and they also said his system contained mercury," Mr Barr said. Dr Kerry was not available for comment.

 

If linked to chelation therapy, Abubakar's death would be the first associated with the procedure since the 1950s, said Dr Ralph Miranda, former president of the American College for Advancement in Medicine, which sets standards for such therapies.

 

He said it was unusual to give young children intravenous treatments. Autism groups warned parents to be aware of the risks of some treatments. Cindy Waeltermann, director of the Pittsburgh-based national advocacy group Autismlink, said in a statement to members: "Some of these therapies are quite dangerous."

 

Generation Rescue, a parent-founded group that believes disorders such as autism and Asperger's are "misdiagnoses for mercury poisoning", estimates that the number of autistic children treated with chelation has risen from about a dozen in 2000 to more than 10,000 today.

 

 

will post other story later..

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I was banned from another site because of my views on chelation therapy and I feel so sad about the death of this little boy.

I have read various accounts of these therapies and in all honestly I feel some amount to child cruelty.

Poor little lad.

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I must admit that within a day or so of diagnosis I was online trying to find a 'cure' but I knew there wasn't a magic wand.

 

Poor little fella.

 

We are fortunate that our son is at the very able end of the spectrum but it si still hard. One of the specialists on Tylers PDDAG said that they way she explains it to newly diagnosed parents is this:

 

Having a child is difficult, its a tough job bringing up kids and similar, metaphorically, to climbing a mountain. Having a child with special needs means you climb the same mountain, but with a rucksack on your back - its just a bit more difficult but you still reach the summit and get the wonderful views on the way.

 

Quite a nice way to look at it. :rolleyes:

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I've never heard of EDTA and I have researched lots. I wonder what the ARI have to say about it.

 

We do chelation in minuscule doses ALA/DMPS Andy Cutler's protocol using ATEC scoring to determine if it's helping. I cannot tell if it is. He is vastly improved at the moment. How long it will last I do not know.

 

With a very 'low functioning' child, I personally cannot not do something, though I spent 3 months reading about fish oil before doing it, a year thinking about diet, 3 years plus on chelation. Extreme behaviour was the motivator and it was either this or Ritalin.

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I'm new so hi!

 

This posting has really touched me, a very very sad story of parents doing what they thought was right for their child. If there had been no reported cases of deaths from IV chelation (a better track record than some �conventional� treatments I can think of!) then perhaps the father as a doctor thought he was probably in a reasonable position to weigh up the pros and cons.

 

I can understand why some wouldn't choose chelation and why some don't see autism as a disorder. If problems aren?t severe and there is a good quality of life it is one thing, but not everyone is as lucky. A lot of decisions some of us make in desperation are because the problems are so bad so early, or because we are so afraid of what might happen in the future when we are no longer around.

 

Our decisions can also depend on what services are available locally for severely affected AS adults. We have looked ahead and thought about what will happen when our son reaches adulthood, that even whilst we are still around we can?t foresee everything and protect him. And we definitely can?t rely on the state. An adult relative lived alone locally with full family support, had a part time job with people who recognised his needs etc. It worked very well for several years. Unfortunately he was made redundant (as was everyone he worked with), and he couldn?t cope with the change. His symptoms worsened, and the family could do nothing because suddenly he had �rights� because he didn't hurt anyone else and didn?t self harm in the usual sense. He died in very distressing circumstances.

 

And yes, our experience with J makes us desperate to find treatments for our son A. What is working at the moment has been very much simpler and cheaper than chelation, but in different circumstances we wouldn?t rule it out. We just don?t think that mercury, lead etc are involved in his case.

 

A is still the same gorgeous child ? just without the rituals, phobias, anxieties, dark circles under the eyes, bleeding gums, diarrhoea etc etc. He sleeps better, smiles, laughs, has friends, talks to people, understands and makes jokes. He?s still A ? but much happier, but we know we?ve been lucky.

 

Sue

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My main problem with the chelation treatment is that doesnt seem to be backed up by any hard medical evidence. If it was of any benefit then surely the legitimate medical profession would welcome it with open arms. It all seems so secretive and mainly American led with links to obscure websites.

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I realise I have heard of EDTA, but it's not something I have pursued at all as it's IV.

 

Have you looked at Theresa Binstock's summary of evidence on the ARI website recently, lorryw? The problem is this is so complex there won't ever be one conclusive piece of research, but I'm glad that the BMA are looking for robust proposals for research into this area.

 

I just don't have the 10 or so years to wait for a 'safe' treatment. I had hoped that diet would allow my son's body detoxify itself but although his immune system is vastly improved, in my totally unqualified opinion, his metabolism still sucks. Two years into the diet he had transformed from stick thin with wasting muscles to having dimples on his bum, and very reluctantly I concluded that detox wasn't going to happen by itself.

 

My aim is to get him to a point where he can indicate his wishes to someone other than me. That is what I consider a 'cure'. So on the other thread where it asks would you cure your ASD child, that is what I vote 'yes' to.

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IV chelation isn't new in this country, there's a clinic in Herts

http://www.breakspearmedical.com/files/chelation.html

They also have a doctor who has a special interest in ASD

http://www.breakspearmedical.com/files/autistic.html

Not sure if its IV chelation but there's also

http://www.naltd.co.uk/conditions/autism.html. Their home page

http://www.naltd.co.uk/ also has some info.

 

As I said, we haven't used chelation, but if I felt it would help I wouldn't hesitate to go and talk about it and get some advice.

 

Sue

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What a sad thing to happen, I am sure his family just thought they were doing what was best for their little boy. I don't know enough about these treatments to comment. My thoughts are with his family at this awful time of course.

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:( This is so so sad :( .I have never heard of this therapy but can understand the desperation parents must have , trying to find treatment to help when their child is suffering. My daughter who is NT was born with deformed feet the first 2yrs were difficult after several surgeries she was able to walk.She has pain and her lower legs are begining to twist.We have sort a contraversial treatment hoping for an improvement, this won,t be life threatening and is non-invasive but we,ve have agonised about it...I can hardly imagine how this family must have agonised about this treatment my thoughts are with them :( .

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