WA News Guest Opinion / Editorial Cannabis and Epilepsy – Why Not?
Cannabis and Epilepsy – Why Not?
Written by Joelle Neville
Monday, 02 October 2017

 

Never in my wildest dreams would I have imagined that I’d be writing for a medical magazine about cannabis. But when our daughter, Ava, was diagnosed with Tuberous Sclerosis in 2005 after suffering infantile spasms since birth, my life went in many different directions.

Our journey began when we were told that she may never walk or talk, and that she may also be profoundly disabled. We were determined to prove that prediction wrong.

Nine long years of seizures, sleepless nights, medical appointments, pharmaceutical trials and surgery culminated in one last experiment. We’d tried everything to control Ava’s epilepsy and the final option seemed to point in the direction of medicinal cannabis.

My husband and I talked about which of us would go to jail if we were ‘sprung’ as we nervously awaited our first shipment to clear customs. It was something of an anticlimax when the postman dumped a parcel on our front doorstep.

We tried a small amount the same night, just to be sure we weren’t sending our daughter off into ‘psychosis’ land. It tasted pretty horrible and had no effect whatsoever. We started Ava on a tiny amount the next morning and slowly built up to about 40mg of CBD a day. After 10 days the seizures stopped.

We were amazed because she’d been having about eight seizures a day, despite being on four anti-epilepsy medications. When she started sleeping through the night, our lives were utterly transformed.

We weaned Ava off three medications and settled on a dose of about 60mg CBD a day. The actual product was the raw extract of a whole plant, low in THC and laboratory tested to ensure quality and consistency across different batches.

For the past three years we have battled, both privately and publicly, against the stigma attached to medicinal cannabis. I can’t tell you how many times a week I’m asked if my daughter gets ‘high’ on it. My answer is always the same, she is far less ‘stoned’ now than she was when we were shoving massive amounts of medication down her throat.

In fact, her general wellbeing and social interaction have vastly improved and she has been able to experience the normal childhood of a 12-year-old girl.

Now we’re fighting a different fight. We’re trying to obtain Ava’s medicial cannabis on prescription and, hopefully, have it subsidised. It currently costs us about $10,000 a year. This is a fight on two distinct fronts: one of education, doctors specifically, and the other a battle against the endless bureaucracy surrounding this issue.

If I could leave readers with one message, it would be to consider the ethical implications of having a drug that could help patients suffering from a number of different conditions and electing not to use it. Surely no one is ignorant of the international and clinical evidence that supports the use of this substance?

A true understanding of cannabinoids is absolutely vital for everyone.