In the eyes of the government Dannielle Luttrell is a criminal.
Why? Because she openly admits to growing her own cannabis to make CBD oil.
Ms Luttrell told nine.com.au she uses the product to treat her permanently disabled son, 10, who had been suffering up to 60 seizures each day before she started treating him with oil containing CBD and THC.
The cultivation of cannabis is an offence in Tasmania unless it is done for medicinal purposes by a person licenced to grow cannabis under the federal licencing scheme.
Cultivating controlled plants such as cannabis or opium poppies is punishable by penalties at different levels depending on the amount of plant grown.
And even though she doesn’t sell the cannabis on the black market, the Tasmanian mother lives in constant fear of police persecution. However, she has taken the decision to speak out in a desperate bid to raise awareness of the issue.
The 41-year-old said her son, Shelby, was born without health problems, but she stared to notice something was wrong when he was just 11 days old.
“I noticed my son wasn’t well and I took him to hospital immediately, only to be told that he had drug withdrawals and that he would be given morphine and diazepam to help him. Knowing 100 per cent that my son had not had any drugs, I pushed for more tests to find out what was wrong,” she said.
“It wasn’t until the lumbar puncture returned with a positive result for meningitis that they started taking me seriously.
“The hospital treated Shelby aggressively with four very strong antibiotics and as a result my son had a bleed on both sides of the brain.”
Ms Luttrell said her son was later diagnosed with spastic quadriplegia – the most severe of the three types of spastic cerebral palsy, marked by the inability to control and use the legs, arms, and body.
“At around four years old, Shelby started having seizures, sometimes up to 50 or 60 a day which was quite frightening,” she said.
“That’s when the doctors started the cocktail pharmaceutical drugs that made him an absolute zombie. My beautiful boy was a shadow of his normal self on all these drugs.”
Ms Luttrell said after much research, she decided to try Shelby on cannabis oil and within 20 minutes she started to notice to remarkable changes, which improved further over time. The young mother said she CBD oil alone does not work and her medicine also includes THC.
“Cannabis has made Shelby’s life so much better. He is eating via his mouth instead of only using his peg (feeding tube), he’s sleeping better, he’s a completely different child now,” she said.
“I will not stop using cannabis because it’s working wonders. My son used to vomit if the wind blew past him and now he hardly vomits at all. He’s a good weight and is looking really good.”
“Cannabis has given my son his life back, he’s doing things we thought were lost to him.”
Ms Luttrell said even though she has gone to the doctors with evidence cannabis is helping her son, they refuse to give him medicinal marijuana.
“They’ve said they want Shelby to try pharma drugs, but those drugs are toxic,” she said.
The young mother added even if she was approved the cost of medicine was too high.
“It’s around $1600 a month for a supply,” she said. “They do subsidies here in Tasmania but try getting approved.”
Ms Luttrell said she hoped sharing her story would help people drop what she said are archaic views about using cannabis as an alternative treatment to pharmaceuticals.
“Help the most vulnerable people in the community get access so they can have a good quality of life,” she said.
IS THERE ANY EVIDENCE?
In 2017, Australian doctors were part of an international trial testing CBD oil in kids with Dravet syndrome – a complex disorder where children suffer drug-resistant seizures and a high death rate.
Published in the New England Journal of Medicine the study gave patients either the cannabidiol liquid or a placebo alongside their normal medications.
Of those given medicinal cannabis, more than 40 per cent had their seizures halved and 5 per cent became seizure free.
University of Melbourne Professor and study author Ingrid Scheffer said she has no doubt CBD can be a valid treatment for seizures, but added it didn’t necessary make it more effective than other treatments.
“We found CBD oil worked in about 40 per cent of cases, however that responder rate is about the same found with other anti-epileptic drugs,” she said.
Prof. Scheffer said while there is evidence to support using medical cannabis to treat children with seizures, the study only looked at cannabinoid oil which contained 98 per cent CBD and less than 0.2 per cent TCH – the psychoactive ingredient found in cannabis. Ms Luttrell claims she used the entire plant as medicine, which included THC as CBD alone didn’t work for her son.
“If it’s not pharmaceutical grade CBD there is no way of telling what’s inside the pill,” she said.
“We don’t actually know the effects of giving THC to children – there is some evidence to show in some cases THC is associated with early onset psychosis.”
Prof Scheffer added the study found some of the patients given cannabidiol reported mild to moderate side effects such as diarrhoea, vomiting or fatigue.
“I’m really supportive of using CBD oil, but it’s about trying to make the decisions for the patient and their family. It’s important that what we administer is safe and good for them.”
As it currently stands, Tasmania allows medical cannabis in limited circumstances where conventional treatment has been unsuccessful, as does Western Australia, South Australia, the NT and the ACT.
Victoria has become the first state to legalise marijuana for young children suffering from epilepsy, while NSW also allows use for patients suffering from serious illnesses such as cancer or multiple sclerosis.
Queensland’s laws are the most flexible in the country, which grant patients of any age or suffering from a range of illnesses access to medicinal cannabis products.