Tuesday, February 19, 2008
New Hope for Autism?
I don't have a date for this story, the link was reported at The Daily Grail today. It's an amazing story and I sure do hope that the treatment it discusses is shown to work "scientifically" - what a hope this could be for the hundreds of thousands of children now being diagnosed with autism every year: Lorenzo's Oil for Autism Written by Danny Penman Rob Nijssen sits hunched over a set of scales in his homebuilt laboratory. He's weighing out herbs, oils and powders, and combining them with the skills of a practiced craftsman. With the mischievous look in his eye, he could be a gifted academic, a drug peddler or an alchemist. He is, in fact, a man trying to save his son from a lifetime of pain and suffering. And Rob believes he's done just that. Five years ago his son, Frederick, was diagnosed with autism. The doctors told him there was no cure and warned him to prepare for a lifetime of struggle. But he refused to give up. As a fervent believer in the power of natural remedies, he decided to develop his own autism treatment. In a story that closely mirrors Lorenzo's Oil, doctors will soon begin testing Rob's autism treatment in a major clinical trial. It's a story that will give hope to the parents of tens of thousands of autistic children across the UK. "Most people think that autism is a mental disease," says Rob. "But I believe that it's caused by parasites which take root in the body because of a weakened immune system." "My treatment works by clearing out all of the toxins from the body, killing off invading microbes, and then strengthening the immune system. It works with the body to help it heal itself. Once the body is healed, then the brain can start to recover." Although it's still very early days, some doctors believe that Rob may have stumbled upon a new and potentially powerful way of helping the autistic. Dr Robert Trossel, a consultant at the Preventative Medical Centre in London, says: "We've seen dramatic improvements in some of our patients. Some began responding within days." Like many children who later go on to develop autism, Frederick was a precocious and gifted child. He was into everything. His bright blue-grey eyes followed his parents everywhere. His face constantly beamed happiness and joy. "In so many ways he was the perfect child," says Rob. "He was always happy. He was very social and always clowning around. Frederick had no serious illnesses. If anything, he was healthier than normal." But all that changed dramatically after Frederick received his MMR jab when he was 30 months old. His health quickly deteriorated and it seemed to Rob that he never quite managed to shake off the after-effects of the vaccination. Persistent colds and ear infections were the first signs that something was wrong. Then his skin erupted with rashes and he developed terrible stomach problems. For week after week, Frederick's health would spiral downwards, only to partially recover again, before weakening once more. "There's nothing worse than having a child with health problems," says Rob. "You want to take on their pain yourself so that you can stop their suffering. You feel it more than they do." Rob soon began suspecting that his son was suffering from something far worse than a persistent head cold, but the doctors dismissed his fears. And as the weeks passed, Rob became increasingly alarmed. Frederick - once an irrepressible bundle of joy - began withdrawing into himself. He became increasingly short-tempered and would often fly into a rage at the slightest provocation. His grasp of speech, which once marked him out as a gifted child, evaporated. He smiled rarely and began endlessly repeating the same things over and over again. One day, when the young family was at the beach, it dawned on Rob that Frederick was seriously ill. Frederick repeatedly picked up a stone, placed it in a plastic bucket before removing it again. He endlessly repeated this obsessive act, over and over again. Each time his parents tried to distract him, he would become confused, angry and upset. Soon afterwards, Frederick was referred to a specialist and diagnosed with autism. "The paediatrician was casual about it," says Rob. "He told us there were no cures or effective treatments available. He simply warned us that we faced a lifetime of struggle. And that was it." "In that moment I decided I'd do my best to try and develop a cure for my son." Rob had heard of the story of Lorenzo's Oil and was determined to achieve something similar for autism. And the parallels are remarkable. As you will recall, Lorenzo was a six-year-old child diagnosed with adrenoleukodystrophy (ALD), a rare genetic disorder that affects the nervous system of boys who have the gene. They are in perfect health until they are five or six, when the first symptoms appear. In the space of a few months, ALD robs its victims of their sight, hearing, and the ability to walk and to swallow. Within two years of diagnosis, the child is usually dead. But Lorenzo's parents refused to give up and spent years developing a treatment based upon the essential oils found in olive and rapeseed. The doctors scoffed but Lorenzo survived. His parents were eventually proved right when the medical establishment was forced to accept that the oils could indeed stave off the disease. Like Lorenzo's parent's, Rob had the resources needed to spend several years developing the treatment. He ran a company selling earth moving equipment outside the Dutch city of Eindhoven. With a turnover of £8 million a year, Rob knew he at least had the money - if not the time - to develop the treatment. Rob moved quickly. He spent 90 hours a week studying autism. He became a regular fixture at scientific conferences around the world and marked himself out by constantly badgering the experts. As a trained engineer he brought a refreshingly different approach to treating autism. Instead of simply trying to cope with the symptoms, he decided to ferret out the root causes of the disease and treat those instead. As a result of his research, Rob became convinced that autism results from a malfunctioning immune system. Correct this, he thought, and the body will begin to recover. It's a theory that is still hotly contested by the experts. Despite his own experiences with the MMR vaccine, he dismisses its links with autism. "MMR doesn't cause autism but it may trigger it," claims Rob. "The real cause is a weakened immune system. Once your immune system begins to fail then the whole body becomes weaker and weaker. It becomes colonised by bacteria, fungi and viruses. If that happens, is it any surprise that the brain and nervous system begins to collapse?" Rob's highly unorthodox treatment works by bolstering the immune system. It uses a combination of natural remedies, herbs, essential oils, honey, probiotics (or ‘friendly' bacteria), as well as vitamins and minerals. They are all given in a precise sequence to first cleanse the body, kill off invading parasites, and then to fortify the immune system. Clearly the treatment is unlikely to do any harm but can it do any good? Rob is convinced that the treatment works - and so do many parents who've used it on their children. Within months of beginning treatment, Rob claims his son began making progress. First of all his digestion improved. Then his moods became more stable and he began sleeping better and regaining his strength. Slowly, step by step, Rob and Anita's son is returning to them. Frederick's improving health was soon noticed by other parents at his special needs school in Weert, 100 miles to the south west of Amsterdam. Word spread rapidly from parent to parent and through the Internet. It wasn't long before Rob was asked to treat other children and has now begun supplying parents across Europe via his website. John Hufkens is one of the recent converts. He claims his 13-year-old daughter, Lianne, is making rapid progress after using Rob's treatment for six months. Crucially for him, his daughter is starting to express and discuss her emotions. One of the main features of autism is its destruction of the emotional bond between sufferers and other people. The autistic often feel that they are the only ones in the world who are fully alive and conscious. In their world, people and animals are no different to objects such as tables and chairs. But in Lianne's case this emotional connection is returning, says her father. When we meet, Lianne appears to be a typical 13-year-old girl. She's bright, bubbly and keen to try out her English. Like any other 13-year-old she alternates between childhood curiosity and adolescent shyness. "I can sleep better now," says Lianne. "I feel different to before but I can't say in what way. I'm less anxious. I used to be allergic to cheese, butter and sugar but now I can eat them. I like them." Such apparently small things as stomaching normal food and being able to understand and express emotions such as fear and anxiety are hugely significant changes, says her father. "She's genuinely making progress," he says. "She now realises that she's part of a group not just an isolated individual. I hope that one day she'll be able to live on her own, have a job and a relationship with a man." Word of Rob's treatment has now spread to Britain, where it's being used by Dr Robert Trossel, a consultant at the Preventative Medical Centre in London. Dr Trossel has a lifelong interest in alternative therapies and often prefers them to more orthodox treatments. But even he was initially sceptical of the claims being made for Rob's autism treatment. Now, after prescribing it for a handful of patients, he says he's impressed. "It doesn't work for everyone but when it does it's very powerful," says Dr Trossel. "Several patients have responded within days. "Patients sleep better, they're better emotionally balanced, less anxious, have fewer bowel problems, and can concentrate better. In my experience it's not a miracle cure. The patients have a lot of catching up to do. But the important thing is that they have started learning again." Despite the involvement of Dr Trossel, the new treatment is still regarded as highly speculative. For it to move towards the mainstream, solid scientific proof is needed. The testimonies provided by the numerous parents who've used the treatment on their autistic children are not enough. Even the evidence provided by practicing doctors such as Trossel in London is insufficient to sway the medical establishment. After all, many of Rob's claims go against the current evidence. Dr Tony Charman, of the Institute of Child Health in London, sums up the attitude of the medical establishment: "The claims for alternative treatments for autism are generally not borne out in the long run. Parents often think that their child has improved but that's frequently down to their perception. When you look at it scientifically then the claims prove to be incorrect. This is unlikely to [be] another Lorenzo's Oil story." But Rob is hopeful that he'll soon have the proof he needs. Dr Ton Haagen, a paediatrician at the Viecurie Medical Centre, one of the Nederland's main hospitals, will soon begin testing the new treatment. Clinical trials are due to begin within months at the hospital. "I think that Rob's view that autism results from immune system problems is right," says Dr Haagen. "I think his way of treating these children is correct too. We now want to assess scientifically whether Rob's supplements are useful in treating autism. One way or the other, definitive proof is unlikely to be available for several more years. But Rob is convinced that the treatment is helping his son. Ironically if it does work, like Lorenzo's Oil, it will be most effective in treating children in the earliest stages of the disease. Frederick, who is now eight, has many, many lost years to make up. "I don't expect my son to be a professor," says Rob. "I want him to be happy and content in his own way. I want him to be accepted by society for what he is and on his own terms."