Some of the biggest news in medical cannabis recently has been CBD’s apparent official recognition as an effective treatment for reducing seizures in children with epilepsy.
That’s because British pharmaceutical company GW Pharmaceuticals released the results of its stage 3 clinical study, showing that its 98% pure CBD drug Epidiolex reduced seizures by 40% in children with the rare epileptic condition, Dravet Syndrome.
However, one parent of a child with Dravet has her own view on Epidiolex and its imminent approval. Vera Twomey, from Cork in Ireland is concerned about the ramifications for the whole plant CBD oil market, and in turn the health of her daughter, Ava.
Whole plant CBD oil reduces Ava’s seizures by 90%
That’s because until 7-year-old Ava started taking CBD oil last autumn, her seizures had been uncontrollable, and doctors had effectively sent her home to die. Since beginning with the whole plant CBD oil, not only have Ava’s seizures reduced by 90%, but her overall wellbeing has improved dramatically.
In an exclusive interview with Endoca Vera says:
“I can say that from personal experience, the findings of the Epidiolex are nowhere near as significant as the results of CBD oils have provided for patients.”
In fact, Ava almost took part in an earlier trial testing Epidiolex on children and young adults with intractable epilepsy. In the end, Ava lost her place to another child, and despite the family’s initial disappointment, they were ultimately relieved when the results were released.
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Doctor admits concerns about clinical trial side effects
Vera clearly remembers the conversation she had with the neurologist who admitted the results weren’t as promising as they had expected. The doctor showed concern at the ‘somewhat severe’ side effects during the trial, which included loss of appetite, diarrhoea, convulsions, and sleep disturbance.
“You could see that she was very disappointed with the results of the trial,” Vera recalls. “I could tell there was something she wasn’t saying to me, so I asked if there were any other side effects, and she said, ‘well, one patient died on the trial.’”
Vera goes on, “I asked the neurologist if she could guarantee that the medication that that child was put on wasn’t the cause of their death. And she said, ‘No, I can’t guarantee that, but I can’t prove that it was either.”
Ava only experienced positive ‘side effects’ with CBD oil
Vera is quick to point out that unlike the reported side effects using Epidiolex, Ava’s experience with whole plant CBD oil has been nothing but positive.
“We got a report last February from Ava’s school, after Ava had been on CBD oil for 4.5 months. Her teachers stated that Ava had made more progress at school in those last few months than she’d done in the previous 2 years. Since she’s been on the CBD oil, it’s opened up her personality. I feel like it’s set her free from the clutches of the seizures.”
Will Epidiolex approval cause crackdown on whole plant CBD oils?
While Vera is delighted about Ava’s improvement since taking CBD oil, she is concerned about what might happen to the whole plant CBD oil market once Epidiolex is approved.
And she is not alone. GW Pharma has spent millions on developing Epidiolex, which if passed will be the first ever approved, pharmaceutical CBD medication. And it is suspected that in return for all this time and investment, the company will insist that the FDA starts cracking down on the hundreds of CBD companies selling their products as nutritional supplements.
In a worst case scenario, this could spell the end for the plethora of CBD companies supplying whole plant CBD oils to parents like Vera.
“A life without Ava’s whole plant CBD oil is a terrifying reality. We have no alternative. The pharmaceutical medications were completely unsuccessful. Nothing has been successful apart from whole plant CBD oil. If that opportunity is taken away, it’s a terrifying prospect.”
Parents must stand up and say ‘no’
Vera, a true canna-warrior mom, is keen to inspire other parents to take action.
“The people who have children whose lives have been completely altered for the better – they will have to stand up and say ‘no’. Because if it’s allowed to happen, it will mean the devastation of the precious progress that families like ours have made with our children and family members.”
Do you share Vera’s fears for the future of whole plant CBD oil? Leave your thoughts in the comments section below.