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As a parent, you’d do anything for your child, particularly if they are desperately ill and conventional medicine is failing them. Across the globe there has been one headline grabbing story after another of parents giving their sick children CBD, the non-psychoactive compound in cannabis for conditions like epilepsy, cancer and autism. But the question still remains, is it safe to give CBD to children?
CBD is a type of compound known as a cannabinoid, found in hemp and cannabis. Since its discovery, scientists have noted that CBD has some very interesting effects on the body; namely, it is anti-inflammatory, pain relieving, reduces seizures in epilepsy, alleviates anxiety, and can have anti-tumoral actions. Unlike THC, CBD does not cause any high, is considered non-toxic and lacks any major side effects. This has made CBD an exciting prospect for scientific research, with clinical trials taking place for epilepsy, PTSD, psychosis, Parkinson’s, and chronic pain.
Researchers aren’t completely certain of how CBD brings about these multiple effects on the body; that’s because it has a completely different mechanism of action than its cannabinoid cousin, THC. Scientists know that THC is almost a perfect fit for special receptors in the central nervous system and the brain, called endocannabinoid receptors. That’s why THC causes the high or stoned feeling. However, despite being from the same plant, CBD has very little direct effect on these cannabinoid receptors in the body. Instead, CBD activates other non-cannabinoid receptors, such as the 5-HT1A serotonin receptor, the TPRV-1 receptor involved in inflammation and pain response and the blocking of the orphan receptor GPRR5’s signalling, which researchers believe may improve bone reabsorption.
That’s not to say that CBD doesn’t have any effect on the endocannabinoid system (ECS) – the complex communication network of receptors and cannabis-like chemicals that brings balance or homeostasis to the body. Researchers believe that CBD can strengthen the ECS by inhibiting the enzyme that breaks down one of the body’s key endocannabinoids, anandamide, as well as delaying its reuptake, meaning that more anandamide is present in the body for longer.
Something worthy of note is that endocannabinoids are also found in mothers’ breast milk, which activate a new born baby’s CB1 endocannabinoid receptors, stimulating its appetite and suckling instinct.
From countries as far flung as the United States, Australia, Brazil, Israel, the UK, and Ireland, success stories involving CBD for kids are regularly making the headlines.
Many, but not all, involve children with a rare and life-limiting childhood form of epilepsy called Dravet Syndrome, in which children sometimes suffer from hundreds of seizures a day. Many of these children do not respond to conventional treatment and doctors are left with no alternative but to send them home to die.
Such was the story of Charlotte Figi, who by the age of 5 was having approximately 300 seizures a week. When doctors ran out of solutions, her parents decided to try medical cannabis and by chance, through the Stanley Brothers, came across a high-CBD strain. It’s the stuff of medical cannabis legends as Charlotte’s seizures stopped, a cannabis strain was named in her honour (Charlotte’s Web) and she became the unofficial star of the Sanjay Gupta pro-medical cannabis CNN documentary ‘Weed’.
Charlotte’s story inspired the parents of several other children with Dravet Syndrome around the world, such as Katelyn Lambert in Australia. Her grandfather was so struck by CBD’s ability to lower his granddaughter’s seizures that he donated $34 million (Aus) to medical cannabis research (he just happened to be one of the richest men in Australia).
Then there was Ava Barry in Ireland, another child with Dravet. Like Charlotte, Ava had been sent home by doctors after being told there was nothing more they could do, but parents Vera and Paul couldn’t give up and simply wait for Ava to die. So after researching on the internet, they started giving Ava CBD oil, which reduced Ava’s seizures by 80%.
Ava’s mom Vera recalls, “I was completely terrified, of course, even though I’d researched medical cannabis for the last 4 years. This is my little girl”.
As well as the reduction in seizures, Ava’s parents saw a noticeable improvement in Ava’s overall well-being and cognitive ability, a story shared by many other children taking CBD for epilepsy.
“She was standing up straighter,” she says. “She was making more eye contact and the next thing, in a family joke, Ava was 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.”
With these high profile cases of CBD successfully reducing seizures in children with intractable epilepsy, it’s of little surprise that the pharmaceutical industry has taken an interest. GW Pharmaceuticals, the British Biotech Company specialising in cannabinoid therapeutics, has produced a purified version of CBD called Epidiolex, which has reached the third stage of clinical trials for both Dravet Syndrome and another rare form of epilepsy, Lennox-Gastaut.
It seems likely that Epidiolex will be approved by the FDA in 2018. It is thanks to this research by GW Pharma that we know that CBD has a good safety profile in children, as most of their research has been carried out on minors. Any reported side effects have been relatively minor and include sleepiness, diarrhoea and lack of appetite.
However, there is one caveat: CBD may affect the levels of some anti-epilepsy medication in the bloodstream. This is because CBD is believed to inhibit the cytochrome P450 enzymes, which break down certain medications like the anticonvulsant clobazam. What in effect this means is that if someone is taking CBD alongside Clobazam, more of the anti-epilepsy drug will remain in the bloodstream, potentially causing unwanted effects such as drowsiness.
In one study, 41% of patients had to reduce their dosage of Clobazam when it was taken alongside CBD, due to the unwanted sedative effects of the two drugs combined. It concluded that more research should be carried out into the interaction between CBD and other anti-epilepsy drugs (AEDs) and that “frequent monitoring of serum AED levels is warranted in patients using CBD-containing products, including medicinal cannabis.”
But overall, the fact that the World Health Organisation recently proclaimed CBD as of “relatively low toxicity” and having “a good safety profile” should put most parents’ minds at ease.
While most of the clinical investigation involving CBD and children has been into the difficulty of treating rare forms of epilepsy, there are some other promising areas of research under way.
One interesting case study, published in 2016 in The Permanent Journal, catalogued the effect of CBD on the PTSD, anxiety and sleep disturbance of a ten-year-old girl who had been sexually abused. She was given 25mg of CBD before bedtime and CBD in a sublingual spray throughout the day when she felt anxious. According to the report, “After 5 months, the patient was sleeping in her own room most nights and handling the new school year with no difficulties. No side effects were observed from taking the CBD oil.”
Brain tumours are one of the most common and deadliest forms of cancer in children. While preclinical studies have been going on for a while, examining the anticancer action of CBD in neuroblastoma, it was the case of William Frost, a British 4-year-old whose ependymoma brain tumour shrunk by two thirds after taking CBD, that provided the inspiration for some current research at Nottingham University into childhood brain tumours.
William’s parents had been told by their oncology team that there was nothing more that could be done for him. Then, they decided to look into alternative treatments, including CBD.
“I was intent on finding a legal route we could go down in order to harness the effects of cannabis,” dad Steve told Endoca. He found a private clinic in the South of England, where a doctor prescribed a synthetic version of CBD.
“We considered this to be the most legitimate source of CBD and proceeded in purchasing his product and following his dosing guidelines.
“William’s oncologist suggested waiting until we had completed conventional treatment before embarking on anything else, although once the tumour reduction had been established, having started the CBD and Ketogenic Diet, he was willing to write the CBD research proposal which we helped to raise funding towards.”
When asked whether he had any concerns about the lack of research into CBD’s long term effects on the body, Steve said: “In all honesty, when your child has a terminal diagnosis, unless there is established research to suggest a drug you’re considering has known negative side effects, you don’t tend to have cause to be concerned with the long term.”
William continues to make good progress and is back at school.
Neonatal Hypoxic-Ischemic Encephalopathy (NHIE) and Perinatal Asphyxia are both conditions in which physical damage is caused to a newborn by lack of oxygen to the brain during birth.
While to many, it may seem counterintuitive to give a cannabis compound to a newborn baby, CBD’s neuroprotective effect means that GW Pharma has been awarded fast track and orphan drug status by the FDA. In a statement the company said, “GW believes that cannabinoids may have a potentially important role in the treatment of high need pediatric neurologic conditions. As a result, we have developed a proprietary intravenous CBD formulation specifically for use in this most vulnerable of patient populations, newborn infants with NHIE.”
Scientists had already found promising signs that CBD could limit the damage caused by lack of oxygen to the brain in a study performed on piglets asphyxiated during birth. Researchers noted improvements in brain tissue oxygenation and a partial recovery in EEG amplitude, which were maintained beyond the acute stage of hypoxic-ischemic brain damage. Any cardiovascular or respiratory side effects were ruled out, “suggesting that CBD may be an effective and safe drug to use in hypoxic-ischemic newborns.”
What could be a better endorsement of CBD’s safety profile than if it becomes a drug given to newborn babies?
However, despite the lack of knowledge in the general medication profession, it is still important to discuss giving CBD to your child with your family doctor or consultant. There’s a fair chance they won’t have heard of CBD, in which case you can give them this article and request that they do their own research.
If you happen to live in a part of the world where there is a medical cannabis program, then speak to qualified medical cannabis physician who can give you more advice. Increasingly, doctors can give online consultations, which is helpful if, like most of us, you live somewhere where medical cannabis is not recognised and regulated. Being overseen by a medical professional is vital for devising a dosing regime for your child that will need to be adjusted regularly. In the US, Bonni Goldstein is one of the most experienced medical cannabis MDs treating children, while in Europe, the Kalapa Clinic sees patients in their Barcelona offices and also offers Skype consultations.
Also key is ensuring that the CBD you give your child is extracted from organic certified hemp that is free from pesticides, heavy metal and mold. Make sure it comes with lab reports that show the cannabinoid and terpene profiles, otherwise you will never know how much CBD, if any, your child is ingesting.
We cannot offer any medical advice about CBD dosing, but doctors such as Bonni Goldstein recommend starting out at 0.5-1mg of CBD per kg per day given in 3 doses. In most cases, doctors are referring to whole plant CBD extractions, rather than the purified CBD liquid Epidiolex, Elixinol, Coyne and the likes thereof which is given at much higher doses (20mg per kg bodyweight). It is an interesting aside to note that research suggests much higher doses of isolated CBD are needed to produce an anticonvulsant effect compared to whole plant preparations.
Be sure to carefully monitor your child, watching out for any reactions such as sleepiness, changes in appetite or behaviour, particularly if they are taking CBD alongside any other prescription medication.
For parents of sick children where conventional medicine has run out of answers, CBD can seem like a last chance at finding some kind of relief for their child. Will it be the cure they’re looking for? Probably not. Might it ease some of the unpleasant symptoms and lead to better quality of life? Depending on the condition, that’s a definite maybe. Is it safe? So far, the evidence looks promising, but as ever, more research needs to be done on CBD and children.