Kaye Dick says seizures have left her son Joe with more broken bones than she can recall. But as one of three Tasmanians now prescribed medicinal cannabis, she is hopeful relief is in sight.
Kaye Dick wishes she could forget the harm seizures have caused her son Joe, ending in breaking many of his bones.
Mr Dick has suffered severe epilepsy since he was two, and Ms Dick said it seemed like the attacks and accompanying seizures had left few bones unbroken.
Ms Dick is hoping her son will get some relief, as one of the first Tasmanians approved under the state’s medicinal cannabis scheme, which got underway in late 2017.
“Every 20 days or so, he’ll have a seizure period over two days of about four big seizures, where he can end up in hospital … or with something broken,” Ms Dick said.
“It all depends where he falls and what he falls on.
“He’s ended up in Hobart hospital with a broken orbit bone around his face, he’s broken his collarbone, [and] he’s broken his nose I don’t know how many times.
“He’s broken a wrist …[and] I think he did do an ankle at one stage, but I’ve never kept a record of that because I don’t want to remember it.”
Mr Dick displayed little sign of pain as he played with the family’s racing pigeons in their backyard at Kindred in the state’s north-west.
But while the 27-year-old remains passionate about his birds, his mother said other skills and hobbies had been lost, as his condition deteriorated with every major seizure.
“It’s horrible, bloody awful. It’s like … having a major car accident, and having brain damage, and you’re not be able to do anything,” she said.
“He used to be able to write — write stories and sentences and things — and do diaries at school, but he can’t do that anymore.
“He used to be able to fill in worksheets … [but] he can’t do that anymore either. He’s just lost some of his skills.”
In an attempt to stem the seizures, Ms Dick has just started treating her son with medically prescribed cannabis.
Mr Dick is one of the first approved for the drug under the State Government’s controlled access scheme, and began receiving the medicine a fortnight ago.
He has initially been prescribed five of the Swiss-made capsules a day, which don’t contain the THC that causes most of marijuana’s psychological effects.
Ms Dick said she hoped the medicine would “cut the seizures out”.
“I’m hoping it halts, and he stays as he is,” she said.
“I don’t think in myself he’ll be able to gain these skills back again because the damage has been done to the brain.”
Medication is ‘probably the last resort’
For Wendy Latimer, medicinal cannabis is also viewed as her last hope of a better life.
On average, the 57-year-old suffers one large seizure a day, and about 100 smaller ones, in what her carer Lee-Anne Aulich described as “one of the most severe cases of epilepsy” she had seen in her 20-year career.
“Some days you can see that it effects her significantly, other days she pushes through and you just admire the way that she does live her days,” she said
Wendy Latimer’s sister Kay Elphinston said the family was hopeful about the potential of the treatment.
“Wendy’s been on every medication that is possible for her, she’s trialled everything, so this medical marijuana is probably the last resort,” she said.
“Obviously we’re hoping for some decrease in the seizures and probably, we feel it might help the pain.”
Patients scrutinised before drug prescription
Before both families received their first prescription, research was conducted by private company Seer Medical.
The company’s staff monitored the pair at home constantly for a week.
Electrodes attached to the scalp monitored changes in brain waves, while a moveable security camera filmed each seizure activity.
The testing will continue regularly over the next six months, and Seer’s managing director Dean Freestone said he hoped the data would provide a valuable insight into the effect of medicinal cannabis.
“It captures information about their epilepsy and also we can understand their behaviour and in that we can understand how they’re reacting to different drugs,” Dr Freestone said.
“What we’re finding is that it does give a very good gauge on how well patients are responding to their medications and new therapies, therefore we think this is going to be a fantastic and revolutionising new types of treatments.”
Since the Government’s controlled access scheme began at the start of September, just three people have received approval for the treatment.
Kay Elphinston said more people deserved a chance at the drug.
“It has been a bit stringent, the application process has been very stringent,” she said.
“My heart goes out to the people that I know that have got children or adults with epilepsy that haven’t been able to get access.”