Pubdate: Mon, 19 May 2014 Source: Herald, The (Glasgow, UK) Copyright: 2014 Herald & Times Group Contact: http://www.heraldscotland.com/ Details: http://www.mapinc.org/media/4784 Author: Helen Puttick, Health Correspondent Page: 3 Bookmark: http://mapinc.org/topic/Epidiolex LANDMARK TRIAL OF MARIJUANA DRUGS FOR STRICKEN CHILDREN Oil From Cannabis Will Be Tested for Safety As Evidence Is Found of Dramatic Improvements I love the idea we can take the damaged brain and reverse it. If that is possible there is still hope for Muir From page 1 A MARIJUANA-based drug will be given to children in Scotland in the hope of transforming the treatment of severe epilepsy in one of the first trials of its kind. PLANS: Richard Chin, of the Muir Maxwell Epilepsy Centre, Patricia Corby, clinical researcher from New York University, and Ann Maxwell. Picture: Gordon Terris Researchers at Edinburgh University and the Royal Hospital for Sick Children in the city are applying for approval to test an oil extracted from cannabis flowers on young people, including babies. Parents of children with extreme forms of epilepsy have reported the medicine, which has had almost all the component that causes a "high" removed, has dramatically improved the symptoms. However, without robust clinical trials to investigate the safety of the drug there is concern parents desperate to alleviate the distressing condition could administer cannabis treatments without prescriptions or information about the potential risks. In Scotland, around 54,000 people have epilepsy and in about one-third of cases existing treatments do not work. Some forms, such as Dravet Syndrome, can cause relentless seizures and serious physical and cognitive disabilities. Dr Richard Chin, consultant paediatric neurologist at the Royal Hospital for Sick Children, Edinburgh, and director of the Muir Maxwell Epilepsy Centre at Edinburgh University, said: "The children can go from having a seizure every day to having even 200 seizures per day. This is what families have to go through. There is obviously a need to find alternative treatments." It is a compound found in marijuana known as cannabidiol or CBD which has been found to help epilepsy sufferers. Apharmaceutical company has produced the oil which contains CBD but less than 1% of the psycho-active component, THC, from plants grown at a secret location in the UK. The drug is named Epidiolex. Dr Chin said: "One of the exciting things about CBD isn't its seizure control alone it is its antiepilepsy properties. It also improves behaviour and cognition. You can put children in intensive care and stop seizures, but it does nothing for their quality of life, nothing for cognition and nothing for the families. To have a drug that stops the seizures and also has cognitive improvement is pretty amazing." The first safety trial of the drug to receive approval from the Food and Drug Administration in the United States is under way in New York. So far, 30 children including a three-month-old baby are involved and Professor Patricia Corby, associate director for research operations at New York University's Bluestone Centre for Clinical Research, described the findings so far as "extremely promising". Dr Chin is applying for authority from both a research ethics committee and the Medicines and Healthcare products Regulatory Agency to launch a similar trial in the UK led from Edinburgh, but also involving Great Ormond Street Hospital, London. He hopes to receive approval before the end of the year and intends to recruit 30 children at each hospital to test the drug. Children will be given small doses of the oil twice a day. Ann Maxwell, who founded the Muir Maxwell Trust in Scotland to help those affected by epilepsy after caring for her youngest son Muir who suffers Dravet Syndrome, has been instrumental in bringing together Dr Chin and Professor Helen Cross, epilepsy expert at Great Ormond Street Hospital, with the New York researchers - helping drive forward plans for a UK university trial. Mrs Maxwell, of Midlothian, said: "Muir has in an awful lot of ways had his life taken from him by epilepsy as have we (as a family) to a certain extent. If I could wave a magic wand and give him his life back, I would. I love the idea we can take the damaged brain and reverse it. If that is possible there is still hope for Muir." The Muir Maxwell Trust is seeking to raise UKP250,000 to support the trials of Epidiolex and is looking for donors. A debate about tackling the stigma of epilepsy through education takes place in the Scottish Parliament tomorrow. [sidebar] 'THE SEIZURES WE CANNOT SEE ARE MORE DAMAGING' MUIR Maxwell was first diagnosed with epilepsy when he was one, but his parents did not know he had the severe form known as Dravet Syndrome until tests were analysed in Australia when he was eight-years-old. Now 17 he is described by his mother, Ann Maxwell as "profoundly disabled". He needs 24 hour care and struggles to communicate. Mrs Maxwell said: "Muir has seizures all the time, but you cannot always see them. It is the seizures we cannot see which I think are more damaging." She and her husband set up the Muir Maxwell Trust in 2003 to provide support to others affected by epilepsy. It has since raised almost UKP8m and funded a DNA service at the Royal Hospital for Sick Children in Glasgow so families no longer have to rely on services in Australia. Mrs Maxwell said when she first heard the notion of giving children a cannabis extract to help their symptoms she thought it was ridiculous, but after talking to experts became convinced that clinical trials were needed. Mrs Maxwell, 50, from Midlothian, is not planning to enter Muir into the UK tests if they go ahead. "My aim has always been to try to make sure that the outcome is better for children who are following behind Muir," she said. However, she continues to hope life-changing treatments will be found. About her own son, she said: "There is a boy in there waiting to get out." - --- MAP posted-by: Jay Bergstrom