When Is It OK To Give Children Cannabis?

Vera Twomey-Barry, mother of 6-year-old Ava who, who due to a rare genetic condition called Dravet Syndrome, suffers from as many as 20 epileptic seizures a day, decided to march the 300km to Dublin from her home in Cork.

Cannabis is very much in the news at the moment. This week a cross party group of MPs have called for cannabis to be legalised in Britain, in the US almost 25% of Americans can now access medical cannabis after several more states passed its use in the recent elections, and in the Republic of Ireland, the mother of a seriously ill child decided to walk to Dublin to demand a change in the country's legal position on the use of medical cannabis for children.

Vera Twomey-Barry, mother of 6-year-old Ava who, who due to a rare genetic condition called Dravet Syndrome, suffers from as many as 20 epileptic seizures a day, decided to march the 300km to Dublin from her home in Cork. Her objective: a meeting with Health Minister Simon Harris to demand a change in the Irish government's current stance, which views cannabis as having no therapeutic benefit and cannot therefore be prescribed by doctors.

Ava prior to taking Cannabis oil - image courtesy of the Twomey-Barry family

Just last December, after 18 consecutive seizures in close succession, Ava suffered a heart attack and had to be rushed to hospital. After trying every medication available, doctors eventually told Ava's parents they could do no more, and sent her home.

Parents Turn to Cannabis as Last Hope

But like any desperate mother in the modern age, Vera took to the internet. One treatment option they hadn't tried before kept coming up: cannabis oil, or to be more precise a non-psychoactive compound found in cannabis called Cannabidiol (CBD).

There have been some high profile cases of children reducing their fits from 300 times a week to almost zero after taking CBD, such as Charlotte Figi in the United states and Katelyn Lambert in Australia.

Not Enough Clinical Evidence

Despite the anecdotal reports and current research, giving CBD to children with epilepsy is still outside mainstream medicine in most countries, with a recent study into CBD for treatment-resistant epilepsy showing adverse effects such as sleepiness, diarrhoea and lack of appetite, and very little known about the long term effects.

But with no more treatment options available, Vera and her husband decided to try what seemed like their one remaining hope.

"I was completely terrified, of course," says Vera. "Even though I'd researched medical cannabis for the last 4 years. This is my little girl".

Since starting with the CBD oil in September, Ava's seizures have reduced by roughly 80%. But not only that, she seems like a different child.

Ava (centre) with her mum and siblings - image courtesy of Twomey-Barry family

"She was standing up straighter," recalls Vera, "she was making more eye contact and the next thing in a family joke, Ava's giggling just like the other kids. She had never laughed like that before.

"She's so much better. We're seeing another side of Ava. We always knew she was beautiful and wonderful, but she's just able to put her point across a little bit more."

While CBD is available as a health food supplement in Ireland and also currently in the UK, Vera thinks that doctors should be allowed to prescribe it.

"The law needs to be altered to allow them to prescribe it," she says, "One neurologist even said to me off the record, if it were his child and he was in my situation, he'd be giving it to them."

Vera isn't just campaigning for the medical use of CBD, but also Tetrahydrocannabinol (THC). "We want a product allowed that's got both CBD and THC, because a lot of people believe that you need the THC part to work more efficiently with the CBD part of the plant."

But this is where things get a bit more controversial, as THC is the compound in cannabis that creates the feeling of being high, and as a result is classified as a Schedule 1 controlled substance. Studies suggest that THC can in fact be damaging to the adolescent brain, with persistent use bringing about neuropsychological decline. There is next to no information about the effects of prolongued THC use on children.

THC and Autism

In certain childhood illnesses however, anecdotal reports indicate that cannabis oil containing THC can be an effective treatment. One such condition is autism.

So far there are no clinical trials proving cannabis can improve the symptoms associated with the disorder, but by chance mother Mieko Hester-Perez discovered it helped her severely autistic son Joey's behaviour when he was prescribed cannabis for extreme weight loss.

"When you're a parent of a child with autism, you have very simple goals and one of my goals was just to see my son smile", says Mieko. "Joey started interacting with other people. He doesn't speak, but he now has a joking personality, something we hadn't seen before."

Image courtesy of Mieko Hester-Perez

Mieko found that a high THC strain worked best for Joey, eventually collaborating with some cultivators in California to create a special variety for children with autism called 'Joey's Strain'.

She is aware that many people feel strongly against treating a child with a psychoactive drug, but remains undeterred. "The only people who are against THC, don't have a child diagnosed with autism. Until you've walked in our shoes, your opinion will fall on deaf ears when it comes to how to take care of our children".

Cannabis and Childhood Cancer

Cases of parents giving cannabis oil containing THC to their children with cancer have also provoked public debate. 3-year-old Landon Riddle's mother Wendy decided to move to Colorado in order to give her son cannabis, when he was diagnosed with lymphocytic leukemia. Giving him an oil with both THC and CBD, she said, "I think that the chemo in combination with the cannabis did put him into remission and now the cannabis will keep him there."

Landon's doctor, Dr. Margaret Gedde in an interview with CNN admitted, "when you look at children who go through that same course of treatment and compare Landon to them, it seems like he's doing better than what would be expected." To this date Landon continues to be in remission and still takes cannabis oil.

Opponents of the legalisation of medical cannabis say that there aren't sufficient clinical trials to prove its efficacy and the UK government continues to classify cannabis as a schedule 1 drug with no therapeutic benefit. The non-psychoactive component CBD has however recently been recognised as a medicine and is currently under review by the UK Medical Healthcare Regulatory Agency.

In the meantime, there are positive signs for Ava's case as Health Minister Simon Harris has granted the possibility of an individual exemption, pending an assessment by a doctor and the issue of a special license.

The minister has also agreed to review Ireland's policy on medicinal cannabis, stating, "I know that many patients believe cannabis should be a treatment option for their medical condition. However, cannabis is not currently an authorised medicine and has not gone through the normal regulatory procedures for medicines which are designed to protect patients and ensure treatments are supported by good evidence of their effectiveness."

To find out more about Vera Twomey-Barry's campaign to change the status of medical cannabis in Ireland please visit Change.org

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