This is a discussion on A word of caution within the Parenting Special Needs Child forum, part of the MummySG Special Group category; Would like to share 2 articles from the Today newspapers about stem cell therapy. The 2nd article is a forum ...
Would like to share 2 articles from the Today newspapers about stem cell therapy. The 2nd article is a forum letter in response to the 1st piece of news.
Taken from TODAYonline | World | Baby dies after injection in the brain
Baby dies after injection in the brain
05:55 AM Oct 25, 2010
DUSSELDORF - Europe's largest stem cell clinic in Germany is at the centre of a scandal following the death of an 18-month-old baby who was given a controversial injection in the brain.
A doctor who worked at the XCell-Centre, based in Dusseldorf, is now under criminal investigation over the child's death in August and the serious injury caused to a second child in another alleged botched operation three months earlier.
The centre has attracted thousands of patients with incurable illnesses from all over the world, claiming that its technique for stem cell transplantation has had success in treating 17 different diseases, including cerebral palsy, multiple sclerosis, autism, Parkinson's, Alzheimer's, heart disease, diabetes and spinal cord injuries.
Such stem cell treatments, which typically cost between £10,000 ($20,340) and £20,000, are banned in most European countries unless as part of a clinical trial because there is still no scientific proof that they work.
According to XCell, about 25 British patients a month - including children with severe disabilities - are treated at its clinic in Dusseldorf and at another in nearby Cologne.
The treatment involves taking bone marrow from patients, harvesting stem cells from the bone marrow and then reinjecting those stem cells into other parts of the body, including the brain, the spine and the neck.
But XCell is now under scrutiny following the death of the 18-month-old baby in August.
The boy, whose Romanian parents lived in Italy, was injected in the brain with stem cells and subsequently died.
In May, a 10-year-old boy from Azerbaijan almost died when the same procedure went wrong. His family is suing the clinic.
Criminal prosecutors are investigating the death and the case of the other child, who is now understood to be more severely disabled than when first treated at the clinic.
Dr Michael Sabel, chief neurosurgical consultant at the University Hospital Duseldorf, has accused XCell of failing to react quickly enough when the 10-year-old boy began to suffer internal bleeding in the brain.
The Paul-Ehrlich Institute, which regulates medicines in Germany, produced a report following the baby's death which concluded that XCell's procedure for injecting stem cells into the brain had been conducted with "damaging consequences". THE SUNDAY TELEGRAPH
Taken from TODAYonline | Voices | Beware miracle cure claims
Beware miracle cure claims
With expert advice, those with special needs can avoid useless, risky treatments
Letter from Dr Noel Chia Kok Hwee 05:55 AM Oct 28, 2010
I refer to "Baby dies after injection in the brain" (Oct 25) and want to applaud Today for this timely news report.
I am an assistant professor in early childhood and special needs education.
Most parents who have children born with moderate to severe learning and behavioural disorders such as autism, cerebral palsy and sclerosis are often desperate for some form of miraculous cure such as the stem cell treatment, as reported.
Indeed, there are countless treatments available in the market worldwide today. Their developers claim their approaches work well for individuals with special needs.
However, a number of these treatments either have not been scientifically validated or have been studied and found to have little or no worth.
Parents and even professionals tend to forget that many of these so-called treatments are still at an experimental stage and have not been subject to scrutiny and scientific validation.
Hence, it is important for parents and those working in allied health and educational professions to be well informed about the various treatments targeted at individuals with special needs.
Recently, the Singapore Academy of Medicine and the Ministry of Health (MOH) jointly published clinical practice guidelines in the Singapore Medical Journal (Vol 51, No 3), providing doctors and patients here with evidence-based guidance on various treatments to manage medical conditions relating to autism spectrum disorders. This important information is also made public on the MOH website.
I believe more can also be done to inform the public on the clinical practice guidelines on other disorders, including rare syndromes like Prader-Willi and Angelman.
Moreover, empirically-sound treatments are not always universally appropriate for all individuals with special needs.
According to Dr Richard Simpson, a professor of special education at the University of Kansas, such treatments are often involved in controversies related to individualised use, outcome claims, exclusive and extensive use, and so forth.
As the list of treatments for individuals with special needs continues to grow rapidly, the challenging problem confronting parents and professionals in terms of choosing the most efficient and effective interventions becomes exacerbated.
Hence, it is often very difficult for parents and professionals to recognise and judge the scientific validity of a treatment designed to be used with individuals with special needs.
Perhaps the relevant authorities and experts in the fields of biomedical science and special education can serve as guiding signposts to advise parents and professionals accordingly on issues relating to treatments for individuals with special needs.
Special needs children are not about grief; they are about hope.