Autism Spectrum Disorder therapy sad note
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.
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.
posted by kevin at 9:16 AM
