Epilepsy
Mother’s agony through the battle to keep fundraising for medical cannabis for epilepsy
Clover Carkeet has seen huge improvements thanks to medical cannabis for epilepsy, when all signs pointed to a very difficult life with potential neurological conditions.
At only 12 weeks old, Doctors diagnosed Clover with a catastrophic form of epilepsy known as ‘infantile spasms’, one of the most brain-damaging conditions.
Emily Carkeet, her mum, was 30 weeks pregnant when scans revealed that Clover was missing the part of her brain that connects both hemispheres.
Sadly Clover is among a small minority of children with the condition that will develop neurological issues early on, causing seizures.
The usual treatment, which is a heavy dose of steroids for six weeks, did not sit well with the parents. They noticed a change in her immediately.
“It was a really awful time for us,” Emily recalls. “They made her extremely poorly. She was so upset and angry. She was basically just staring into space.”
Once the first treatment was over, a strong antiepileptic drug ‘vigabatrin’ was administered, which helped with her development in the early stages of her life. Or at least, so doctors thought.
Over-the-counter CBD oil for epilepsy
However, Emily and her partner, Spencer Carkeet, believe that it wasn’t just the medication the doctors prescribed that was having an effect.
“I was always searching for the answers for Clover,” Emily says. “I found that the children who were taking some form of CBD all seemed to be developing fairly normally. Their seizures were well controlled and they were spending less time in hospital.”
At four months old, Clover started on very small doses of an over-the-counter CBD oil, after her parents had done a lot of research.
She continues: “Every time we increased her dose she would learn something new, physically her development was ahead of some of her neurotypical peers, she crawled at nine months and walked at 13 months, all these things that they said she wouldn’t do.”
Horribly, after a further five months, Clover relapsed and developed ‘focal seizures’. Her condition worsened, and despite an increase in her prescription pharmaceuticals, she was having as many as one hundred seizures per week.
"At a crossroads" with cannabis for epilepsy
It was here that Clover’s parents felt they were at a crossroads and faced with a difficult choice. Continue with their usual prescription, or seek private help with medical cannabis for epilepsy.
“It became abundantly clear that what we could buy over the counter just wasn’t strong enough for her,” says Emily.
“We were at a crossroads really; we could either add more meds… but we had made a vow in those early days that that was not what we wanted for her. I wanted to give her a chance to have a quality of life, and we believed the best chance of that was by staying as far away from heavy-duty drugs as possible. That’s when we decided to go down the prescription route.”
In August 2020, at a private clinic, Clover met the criteria and was accepted into a new treatment plan. After only three months, her seizures dropped a massive 95 percent.
In a further five months, Clover’s prescription was broadened to include THC medication ‘Bedica’. “THC was the game-changer for her. She was sometimes going 10 days without a seizure,” says Emily.
“The biggest doubt for me was that THC might have detrimental behavioural and developmental effects, it worried me, but less than having her on a benzodiazepine, wired up to machines in a hospital. As her mum, I’ve always followed my gut instinct.”
A “constant juggling act”
Clover is now actually reducing her prescription drugs, as her development is coming on well and her communication is improving.
“I had read about neuroprotective benefits from cannabis and genuinely think that because she’s had it in her life since she was so young, it’s probably protected her brain,” she says.
“We’ve never seen any regression from any of her seizures and I honestly think it’s the cannabis we have to thank for that.”
Both parents have been able to return to work whilst Clover attends nursery, and even with fundraising, they are still paying upwards of £600 each month with their own money.
“I feel an extreme pressure to be working more than I am because we have this prescription to pay for,” she says. “The person who suffers from this is Clover because she doesn’t get as much of her mum as she needs.
“There are so many parents who are desperately trying to get this medicine because they see the results,” she adds. “It’s an injustice that they can’t access it.”
