If you’re the parent of a child with epilepsy, you probably want nothing more than for the seizures to stop. Unfortunately, conventional medicine doesn’t always hold the answers. About a third of epilepsy patients do not respond to their medication, and those that do, may also encounter a host of side effects such as agitation, tremors and drowsiness.
Clinical studies show CBD reduces seizures
It’s little wonder then there is so much excitement about the anticonvulsant effect of CBD, the non-psychoactive compound in cannabis. Clinical trials are now backing up what many patients have known for years, that CBD can reduce seizures with next to no side effects.
For some, the results have been so dramatic they have gone public, telling all that will listen about how their child’s life have been transformed thanks to CBD. Charlotte Figi was the first high profile case to capture the public imagination featuring in the CNN documentary ‘Weed’. But since then we’ve seen the likes of Katelyn Lambert in Australia whose millionaire grandfather Barry donated $33.7 million to cannabinoid research, and little Ava Barry, whose mother Vera has moved the world with her tireless campaign to change the hearts and minds of the Irish government.
What undoubtedly grabs the headlines are the amazing reductions in seizures, in some instances dropping from hundreds a week to almost zero, as in the case of Charlotte Figi. The most dramatic cases tend to be children with the rare form of epilepsy, Dravet Syndrome. Most young Dravet sufferers are learning disabled, as there is an inevitable link between the number of seizures experienced and the degree of developmental delay. Just imagine the damage done to a child’s brain if they have just one grand mal seizure, let alone if several happen on a daily basis.
So it would make sense that by lessening the amount of seizures, some improvements in a child’s intellectual and emotional development would also be observed, Something that has been confirmed in the testimonials of many parents of Dravet children who have been given CBD.
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We’re seeing another side of Ava
Back in November last year, I spoke to Vera Twomey about the changes she saw after giving CBD to 7-year-old Ava.
“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.”
An experience echoed by Joy Lambert, the grandmother of 5-year-old Katelyn, another Dravet sufferer who shared with Endoca, “I’ve seen such a difference in Katelyn since she’s been on the CBD. She’s happier, she’s more alert, she goes to preschool.”
CBD: Better sleep and appetite
But it’s not just making strides in emotional development that seems to accompany CBD and epilepsy.
Mustafa Duman is a 17-month-old with cerebral palsy living in Turkey. At 14 months his parents also noticed that their baby was experiencing epileptic seizures.
Mustafa had been prescribed anticonvulsant medication by his neurologists. But the various drugs showed no signs of reducing the seizures and also had some unwanted side effects.
His father Fatih explains. “These drugs made Mustafa’s perception limited, it made it difficult for him to learn.” The parents witnessed how their son lost the ability to say the few precious words he’d learned such as ‘grandfather’ or ‘come’. Not only that, but he showed aggressive behaviour, disrupted sleep, had little appetite or interest in his surroundings.
A few months ago, Mustafa began taking Raw Hemp oil containing both CBD and CBDa for his epilepsy, and as well as a reduction in seizures, the parents saw an overall change for the better in his wellbeing.
“After we started taking the Raw Hemp Oil,” says Fatih, “Mustafa became calm, regularly sleeping, a child with a much stronger immune system. He was more aware and started to feed regularly.”
One can sense the collective relief felt by the parents of epileptic children whose condition has responded favourably to CBD, and how that relief becomes elation when they see their child develop in ways they never thought possible.
Writer Fred Vogelstein captures this perfectly when he shares a message sent home to the family during his son’s participation in an initial trial of the CBD pharmaceutical drug Epidiolex.
“Along with being nearly seizure-free, Sam is more mature, more relaxed, and funnier. No idea if that is a physiological effect or just a result of not having his train of thought interrupted all the time, but who cares … I love to see all that come out.”
Scientific studies also back up these findings with a trial testing Epidiolex on children with Lennox-Gastaut, another rare form of Epilepsy noting that 53% experienced improvement in sleep 71% in alertness, and 63% in mood during CBD therapy.
What causes the additional improvements in children with epilepsy who take CBD?
But Vogel’s question warrants pondering. Are these developmental improvements purely a welcome side effect of less seizures or is there something else at play?
Professor Greg Gerdeman, Assistant Professor in Biology specialising in neurobiological targets of cannabis, thinks there just might be.
“I think it’s a combination. Kids with these childhood epilepsy syndromes like Dravet are experiencing so many seizures. The small ones often invisible to parents, their cortical brain activity is in all kinds of nearly constant disarray. Alleviating that must surely allow for them to more effectively express a personality.
“But CBD and THC also clearly interact quite directly with circuitry of mood and aggression, and how these interact within complex networks determining the selection of actions, and whether behavior is dominated by reactive fear and aggression, etc.”
Inevitably, CBD’s toning effect on the endocannabinoid system must certainly come into play, especially when one considers Vincent Di Marco’s catchy definition of “Relax, eat, sleep, forget, and protect.” Could it be, that with a recalibrated endocannabinoid system, some of those functions we take for granted begin to regain normal function in children with epilepsy?
CBD – a neuroprotectant
The protective function of the endocannabinoid system is one that is shared with the cannabinoid CBD. Indeed the federal government holds a patent for CBD and other cannabinoids as neuroprotectants and antioxidants.
One could hypothesize therefore that on administering CBD, some of the damage caused to young brains during epileptic seizures might just be repaired, potentially leading to the reported improvements in language and intellectual ability so often experienced after taking CBD.
Gerdeman continues: “There is good, evidence-based rationale that cannabinoids may simultaneously be promoting neurogenesis (the growth of new neurons), disrupting amyloid plaques, etc. It’s of course very reasonable to think that these homeostatic mechanisms add to the unique therapeutic potential.”
Right now no one really knows for sure why CBD has the broad ranging effect it does on children with epilepsy. Professor Uri Kramer, Director of the Pediatric Epilepsy Service, at the Tel Aviv Sourasky Medical Center, regularly prescribes CBD to his epilepsy patients with profound effects. Referring to the changes in sleep, appetite, concentration and mood, he says, “I am witness to these positive effects as well. It occurred in some of my patients (only part of them) even in the absence of seizures’ improvement. I do not have a good explanation. The hypothesis, of course, is that since cannabinoids are affecting many systems via different receptors, it influences also behavior.”
In the coming years, as more knowledge is gained about the pharmacological effects of CBD, there will be a greater understanding about why one molecule could be so far reaching. Until then, parents of kids with epilepsy and indeed the children themselves, will continue to reap the rewards without questioning things too much. After all, it must make a refreshing change to experience unexpected positive side effects rather than the usual litany of negative ones that often come with pharmaceutical drugs.