Tara O’Connell was resuscitated eight times in 2012, then again in January 2013. She used to suffer 65 epileptic seizures on a ‘fantastic’ day. A terrible day was when she suffered over 500 seizures! When she was three years of age she began the first of many unsuccessful pharmaceutical treatments after being diagnosed with intractable paediatric epilepsy (Dravet Syndrome) along with Autism Spectrum Disorder (Pervasive Developmental Disorder-Not Otherwise Specified, PDD NOS). “Her IQ was being thumped into nothing by the condition and the medication”, her doctor said, “… dealing with a child who was actually becoming sicker and sicker and sicker, and sooner or later she would die of this”. In 2012, Tara’s mother Cheri was told there were no further options for treatment to try, “We were basically told to prepare a funeral”, she said.
Tara suffered from debilitating childhood epilepsy. After exhausting traditional treatment options, her family turned to medicinal cannabis in desperation.
This video was first published 30 June 2014
Because of the lack of efficacy of available treatments, Cheri went looking online for more unorthodox solutions and came across medicinal cannabis, legal in over a dozen other countries. “Our biggest concern was the law” she said. “We weren’t concerned with it not working, whether it would get her high – which it doesn’t – they were not concerns because she was already high on all the other medications. She was already dying. We couldn’t make the situation any worse”. She discovered Tony Bower’s company, Mullaways Medical Cannabis, which delivered across Australia at little or no cost. Mr Bower provided Tara with cannabis medicine in the form of tincture, 97% free of neuro-active compounds (THCa, precursor to the neuro-active tetrahydrocannabinol) and estimated that 10,000-20,000 children were at that time, waiting to access the treatment. Tara was the first child he treated. The first day Tara took medical cannabis, she went down to about 10 seizures. Ten days after she began the medication, she stopped having seizures. She has had only one seizure since then and has been entirely seizure free since April, 2013. Her doctor described her response to the treatment as miraculous. “She’s on a very small dose … in a liquid form and I’m not aware of any side effects”, he said. “She’s talking better, she’s walking better. I see nothing but positives”.
In November 2013, then 8-year-old Tara was neuropsychologically reviewed. Her previous review in December 2012 had revealed a pattern of generalised decline in cognitive function. Tara had been experiencing regular seizure activity, was on multiple anti-convulsants, was exceedingly difficult to engage in formal testing and cognitive results were modest, in 2012. A finding of cognitive regression was made, supported by functional deterioration as noted by Cheri and increasing difficulties at school, as described by her teachers. At review in 2013 however, Cheri pleasingly described that Tara remained seizure free after seven months on medicinal cannabis and the ‘conventional’ anti-epileptic medications had been gradually weaned, through June 2013. The only side-effects related to the medicinal cannabis had been heightened appetite and increased need for sleep.
Cheri described “massive changes” in Tara since her epilepsy was controlled with medicinal cannabis. She was reading, could count, recognised most of the alphabet and some words. Tara could write her first and most of her surname, was speaking in full sentences and attending a mainstream primary school, full-time (no longer at a specialist school). Her initial fatigue also lessened and she no longer required a sleep at school. She now interacted with friends, was toilet trained (only occasionally wet a night nappy), was eating a fairly normal diet, feeding herself and showering with help from her sister. Tara’s classroom teacher noted “huge improvements across the board” including reading and comprehension, understanding numbers and physically, gross motor skill and fine motor control improvements.
On formal examination, Tara’s overall cognitive performances were significantly improved on those documented twelve months prior. Tara’s academic performance was consistent with approximately a 5½ year old equivalent level across tasks of both literacy and numeracy. Tara’s progress on medicinal cannabis was wonderful to see, noted the clinical neuropsychologist. “… Tara is no longer having seizures and has been weaned off her ‘conventional’ anti-convulsant medications since commencing medical cannabis together with the cessation of her seizures there is a convincing clinical history of improvement in all facets of her presentation as reported by her mother and thoroughly corroborated by her teacher’s report”. On formal neuropsychological review the clinical neuropsychologist noted that Tara showed remarkable improvement in cognition over the year, December 2012 to November 2013 and that this improvement was obvious from both a qualitative and quantitative viewpoint, and “quite striking”. Qualitatively Tara presented as much more available and engaged and this was reflected in her objective scores.
In 2013, Tony Bower spent six weeks in prison on charges of cultivating, before being released on a good behaviour bond. After continuing to grow cannabis for medicinal use, he was due to appear in court (again) in 2014 on charges of cultivation and breaching his bond. “There is a chance that I could go to prison for two years. The business wouldn’t be affected. It would be these children’s lives”, he said. In October 2014 he appeared in the Port Macquarie District Court (New South Wales) to appeal the severity of a 12-month jail term handed down for cultivating plants while on a good behaviour bond from the District Court for a previous cultivation offence. He was placed on a six-month good behaviour bond, and vowed to continue making tinctures.
A police helicopter had spotted 76 plants, each marked with a patient’s name, just days before Tony’s 12-month good-behaviour bond was due to finish. The Judge on appeal, Paul Conlon, agreed the 76 plants were not being grown to make money, but rather for altruistic reasons and said there was no way in the world Tony should be sent to jail. Barrister Jason Todman told the court a child somewhere would be harmed if Tony Bower was sent to jail. The court also heard numerous submissions in support of Tony’s work, including testimony from respected drug and alcohol specialist, Dr Alex Wodak, who was instrumental in setting up Australia’s first and only needle exchange in Kings Cross in Sydney (continuing to save lives to this day). David, Tara’s father said, “I have no doubt that if he (Tony Bower) does do jail time, Tara will die”.
After over a year on medicinal cannabis, Tara’s doctor stated, “I know nothing about this medication, in fact, and really do not feel able to comment on long term effects. All I know is that for the past 14 months, we’ve had a miracle. This child has gone from disabled and the whole family focussed on her illness, to a normal family and a normal child”.
Fast-forward to April 2016 and Cheri publicly expressed her dissatisfaction at the efforts made by the Victorian state government. Passing of the Access to Medicinal Cannabis Bill 2015 meant Victoria was to be the first Australian state to permit ‘medicinal cannabis’. The Government said it would only be available to people in exceptional circumstances, with children suffering from severe epilepsy the first to access the medicine, in early 2017. Cheri said the process in Victoria was too slow and exclusive. Medicinal cannabis had helped not only her daughter Tara, but also her son, Sean, as both children suffer from epilepsy. She said her family had dealt with dozens of seizures a day, until both children began taking medicinal cannabis. “We’ve had three years without a seizure”, she said.
But the legislation put forward by the Victorian State Government was far too restrictive on who could use and what products could be used and Cheri probably would not be allowed to legally use the product her children had been successfully treated with. “The product’s there and ready. The company we are working with has done everything possible to meet all government regulations, it’s under all the food standards, it’s ready to be shipped internationally”. She was also critical of the restriction to limit initial use to children, but not adults with severe epilepsy. “By the time this legislation comes into place, my son will be 15 … in three years he would then be kicked off the program”, she said. “What about the kids now who are 18, 19, or even the 30- or 40-year-olds that are enduring hundreds of seizures a day? Just because of their age I don’t believe their seizures are any less worthy. By 2017, how many more kids will have died without access to the products they need? Certainly mine would have if we hadn’t have gone off on our own. It’s ready to go now, there are those who could have it up and going in three to six months. Why wait for a government grow?”
It is estimated over 250,000 Australians are living with epilepsy and approximately
3-3.5% of Australians will experience epilepsy at some point in their lives.
In August 2016, the Victorian government completed Australia’s first horticultural cannabis trial and were ready to begin cultivation for the first patient group to benefit from medicinal cannabis. Premier Daniel Andrews marked the occasion with a visit to the state’s secret laboratory, posting photographs on his Facebook page, stating, “I can’t tell you where it is, but I can tell you what’s going on there. It’s where we’re growing Victoria’s first crop of medicinal cannabis – a crop that will improve the lives of hundreds upon hundreds of kids suffering from severe epilepsy. I can also tell you … our trial is entering phase two and experts are looking at how our medicinal cannabis scheme can be expanded to other patients with different conditions”. The Victorian State Government decision to establish a government-run medicinal cannabis industry does not go far enough to support families of people with severe epilepsy, Cheri said in October 2016, heavily criticising the plan as “too little, too late”.
In early January 2017, Senator Pauline Hanson posted on Pauline Hanson’s One Nation Facebook page, “Most of you know I’ve been a long advocate of medicinal cannabis, due to its effective relief for so many ailments, conventional drugs can’t offer. I can reveal … I appealed direct to the Prime Minister to intervene and give amnesty to users and suppliers of this vital life saving ‘drug’ so many people and families are no longer forced to use this in secret. Bipartisan support from Labor and LNP Governments in Queensland have passed the use of whole plant medicinal cannabis in the lead up to Federal laws which have also passed. My understanding is, there is no legal supplier at present in Australia …”. Cheri commented in reply about Tara’s illegally healed status and how she was celebrating almost four years seizure free, pharmaceutical free and further, it was Australian medicinal cannabis that had healed her daughter to the point she no longer needed daily dosing.
Tara is now in Grade 5 at school, with the reading age of a child in Grade 4, and without cannabis, Cheri has no doubt her daughter would not be here at all. Cheri recalled when Tara was given 12-24 months to live, they had no choice, it was either illegally healed or LEGALLY DEAD! Cheri also informed Pauline that the current Prime Minister already knew Tara’s story. Cheri stated she would actually like the PM to look Tara in the eye and tell her, in person, that her life isn’t worth saving! Cheri is convinced, as many, many other parents across Australia are also convinced that if a child related to the PM needed medicinal cannabis, the law would have been changed long ago. Cheri continued that cannabis had done what no other pharmaceutical could ever do, saved Tara and gave her quality of life.
Cheri’s advocacy led her to be appointed President of the HEMP (Help End Marijuana Prohibition) Party, Victoria. She said the government had moved too slowly and that suitable products were already available in Victoria. “What we’re using has less THC than what’s available – hemp seed oil is available, it’s not meant to be consumed, but how can they know that for sure”, she said. Premier Andrews said it was “landmark reform” for Australia and would help end the suffering for children with epilepsy, “I’ve seen first-hand how medicinal cannabis can change people’s lives. This landmark reform means Victorian families will no longer have to decide between breaking the law and watching their child suffer”, he said. But Cheri said it was only a “band-aid fix”. “In the end, we want to help more than just epileptic kids. There are thousands of people across Victoria who need access to products, many aren’t going to be included in the government grow”, she said.
In April 2017 it will be four years seizure free for 11-year-old Tara, after being ‘written-off’ by the medical mainstream, given 12-24 months to live, over five years ago. Tara remains seizure free on home-grown medicinal cannabis, illegally healed. Epilepsy (and the law), you did not win!
As a footnote, those who need it now say legal ‘medicinal cannabis’ is too expensive and is not on the Pharmaceutical Benefits Scheme. So, where in Australia is ‘medicinal cannabis’ legal? The Federal Government deems ‘medicinal cannabis’ use as still illegal, only available through trials and limited special access schemes. However, the Federal Government passed legislation ‘legalising’ cultivation of cannabis for medicinal purposes.
Australian Capital Territory – In October 2016 the ACT was working on legislation expected to come into effect in 2017. The Government announced it would establish a scheme, rather than starting with a trial. The Assistant Health Minister said, “Now the Commonwealth has acted, we can establish a scheme that will treat medicinal Cannabis products in the same manner as other medicines … The ACT Government will develop evidence-based guidelines to inform and support medical practitioners in how to best prescribe medicinal Cannabis products”.
New South Wales – Premier Mike Baird said in 2016 that 40 children with the most severe cases of drug-resistant epilepsy would have access to a ‘cannabis-based treatment’ under a compassionate access scheme (the former scheme saw suppliers and patients persecuted and prosecuted). NSW is also conducting a trial for patients suffering vomiting and nausea as a result of chemotherapy.
Northern Territory – Not legal.
Queensland – From March 2017 a specialist should be able to prescribe Cannabis for certain patients who have illnesses including MS, epilepsy, cancer and HIV/AIDS. There are no age restrictions, but approval will only be provided by a doctor who needs to show evidence that Cannabis could help the patient. However, there are NO products available to be dispensed in Australia, all must be imported at huge expense to the patient. No amnesty for current suppliers nor patients was reiterated by the Health Minister in January 2017.
South Australia – In April 2016, SA Health Minister Jack Snelling ruled out changing the law in South Australia. In early October 2016, the Australian Cannabis Corporation was formed to grow medical Cannabis with the government saying it will support the industry. “The government understands the importance of removing barriers to help develop a medicinal Cannabis industry and supports in-principle medicinal Cannabis research and development …” said a government spokesperson. Patient access will be by prescription from specialist medical practitioners to patients with serious, chronic illness unresponsive to conventional treatment and products made under commonwealth licensing or imported under a permit issued by the TGA.
Tasmania – The State Government announced in April 2016 that specialist medical practitioners would be allowed to prescribe to patients suffering serious and chronic illness from 2017 by developing a Controlled Access Scheme, to allow patients to access unregistered cannabis. It is expected to come into effect in 2017.
Victoria – It’s ‘legal’. It was the first state to pass legislation ‘legalising’ the use of medicinal cannabis. Children with severe epilepsy will be the first to access medicinal Cannabis products in 2017, the Health Minister said after the Access to Medicinal Cannabis Bill passed in April 2016.
Western Australia – In October 2016 the Government passed changes supporting federal legislation; doctors will be able to prescribe Cannabis under strict conditions. The WA Government previously said it would not conduct medicinal cannabis trials until it received the results of testing in New South Wales.
Adapted from Medical marijuana credited with girl’s ‘miracle’ recovery, Cannabis medicine man Tony Bower escapes jail, Cheri O’Connell, Medicinal cannabis cultivation laws delayed by Federal Government, angering sick Australians, Victoria’s medicinal cannabis crop close to cultivation as Premier poses with plants, Cannabis move “too little, too late” advocate says, Medicinal marijuana: Queensland parents fear for sick children after cannabis oil bust, and Anti-epileptic medications
*For comparison, it is noted that, “The only side-effects related to medicinal cannabis … heightened appetite and increased need for sleep!”
AEDs – Side effects – All medications have the possibility of causing side effects. There are three main types of anti-epileptic medication side effects.
mild side effects, common when starting anti-epileptic medications, particularly if dose is increased rapidly; nausea, abdominal pain, dizziness, sleepiness, irritability, anxiety or mood changes. Usually not serious … your doctor may slow the rate at which medication is being introduced or may cut back another anti-epileptic medication with which it may be interacting.
- some side effects are common to anti-epileptic medications when prescribed at too great a dose and are similar to being ‘drunk’ e.g., unsteadiness, poor concentration, sleepiness, double vision, vomiting, tremor.
some side effects are peculiar to individual medications and only occur in some people e.g., rash, blood problems, liver problems, severe behaviour disturbance, worsening of seizure control. There are some patients or situations in which there may be increased risk of such side effects with a certain medication.
As numerous side effects are listed against all medications, your doctor should help you understand which are the more common or potentially serious side effects to look out for. For urgent information please contact your doctor, pharmacist or the Poisons Information Centre 13 11 26 (nationally across Australia).
information from the Royal Children’s Hospital (RCH), Melbourne