A new study on CBD-enriched cannabis oil for seizures involving eight children revealed that electroencephalogram (EEG) abnormalities improved by 20 to 80 percent.
The study on seizures, published online, examines if CBD-enriched cannabis oil used as an add-on therapy could help children with condition that causes spasms. It found that four of the eight children in the trial had less than half the seizures they had before the trial.
The researchers reviewed the experiences of eight West syndrome children who were refractory to anti-seizure medications between May 2020 and March 2021. The children were aged between sixteen to twenty-two months and each received a dose of 25:1 CBD to THC as an add-on therapy.
The participants record a mean of 63 seizures per day with the lower rate recorded as 31 and the higher amount recorded as 79.
At the follow-up appointment, two of the patients reported a 75 percent to 99 percent decrease in frequency. A further two children recorded a 50 percent decrease while one patient did not experience any changes at all.
The authors wrote: “The index of EEG (electroencephalogram) abnormalities improved between 20 per cent and 80 per cent in seven patients concurrently with the reduction in seizures.”
“Tolerability among those patients experiencing fewer seizures was good and, overall, “adverse effects were mild and transient.”
West syndrome is a form of epilepsy. According to Epilepsy Action UK, West syndrome happens in about one in every 2,5000 to 3000 children. This means that about 350 to 400 children will develop the syndrome each year in the UK.
In 9 out of every 10 children, the first seizures will take place in the first year between three to eight months of age. They may happen in clusters or runs rather than singularly. The children may go on to develop learning difficulties as a result of the syndrome.
A new study published this month shows that CBD transdermal gel may help to reduce seizures and improve children’s quality of life.
The study, Safety and Tolerability of Transdermal Cannabidiol Gel in Children With Developmental and Epileptic Encephalopathies, was conducted in Australia and New Zealand. It involved 40 children with Developmental And Epileptic Encephalopathies (DEE). The authors noted that the DEEs were the most severe type of epilepsy typically beginning in childhood.
The non-randomised, clinical trial involved CBD gel being applied twice a day for six and a half months on children aged three to eighteen. The gel had a CBD content of 125 to 500 mg.
The researchers found that the gel helped in response to facial impaired awareness seizures potentially reducing them to 44.5 percent. It also helped to reduce tonic-clonic seizures where the muscles violently contract by 22.5 percent. Overall, the seizures in 33 participants were reduced by 43.5 percent.
The children also recorded improvements in alertness, alongside the seizure reduction.
BPNA publishes new guidance on prescribing medical cannabis in epilepsy
The updated guidance has been described as ‘unethical’ by medical cannabis experts.
New guidance published this month by the BPNA on the prescribing of medical cannabis, has been described as ‘unethical’ by experts.
The British Paediatric Neurology Association (BPNA) this month updated its guidance for clinicians on the prescribing of cannabis-based medicines for children and young people with epilepsy.
It’s the first time the framework has been updated since 2018 and comes following the amendments to the NICE guidelines earlier this year, clarifying that clinicians can prescribe medicinal cannabis in appropriate cases.
The BPNA’s view that it must be a paediatric neurologist who prescribes, is not supported by national guidance, with the Medical Cannabis Clinicians Society (MCCS) recently highlighting that it is “legal and acceptable” for a paediatrician with an interest in epilepsy to prescribe, under a shared care arrangement with a trained cannabis physician.
This, along with its insistence that there is “no evidence” for the safety and efficacy of medical cannabis products and “concerns” about the effect of exposure to THC on the developing brain, is widely blamed for the lack of access to NHS prescriptions for children with epilepsy.
Blocking private access
But while many would hope any new guidance would make things easier for doctors wishing to prescribe cannabis-based products, the BPNA has been accused of making things worse for patients and even trying to “block private access”, as well as that through the NHS.
The BPNA has now put the onus on the prescribing doctor to ensure families can afford to carry the financial burden of accessing this medicine privately.
“If a paediatric neurologist prescribes an unlicensed CBPM in private practice they should also be certain that the family can sustain the cost of ongoing private prescriptions,” the BPNA states.
“We consider it unethical to initiate a treatment in private practice for which funding is not available in the longer term. The NHS is unlikely to meet the cost of future prescriptions of an unlicensed medicine that has no Level 1 evidence of efficacy and safety. “
It comes following reports of parents being forced to sell their home and rely on fundraising to pay for these medicines privately, an average cost of £2,000 per month.
The Medical Cannabis Clinicians Society (MCCS) has slammed this move as “totally unacceptable” and accused the BPNA of driving patients to the black market with its “outdated” stance.
Its chair, Professor Mike Barnes, told Cannabis Health: “It is not in any way standard practice for a doctor to enquire whether a family can support funding in the long term. Such an inquiry is unethical and such a situation would of course not arise if a doctor prescribed it on the NHS, as is legal.
“The stance of the BPNA is driving patients and their families into private practice and in some cases into the black market.”
Hannah Deacon, director of the MCCS and mother to Alfie Dingley, agreed, saying this would leave patients denied access in every avenue.
“The BPNA now appears to be trying to shut down private access as well as NHS access,” she said.
“This new guidance is placing all the onus onto the private doctor to be responsible for ensuring that families can afford to pay for the prescriptions before they’re issued. There would be no way that any private doctor would do that for any other medication. This guidance causes harm and all it’s going to do is push people to the black market.”
Real world evidence
The BPNA claims that the prescribing of cannabis medicines is “largely untested”, despite the fact that there are now over 10,000 patients prescribed for in the UK including around 200 children with treatment-resistant epilepsy.
The MCCS also points out that there is a “significant volume of efficacy and safety data” in the form of real world evidence.
“Members of the BPNA have been trained in the prescribing of pharmaceutical products which have RCT data behind them,” Deacon said.
“What we would urge them to understand is that this is a botanical medicine with many hundreds of compounds which cannot go through the randomised control trial process effectively, and real world evidence very much has its place here to prove safety.”
The impact of not prescribing
Prof Barnes added that the new guidance has failed to recognise the “downsides of not prescribing” which include a poorer quality of life, brain damage and even death.
“There is no recognition of the fact that these children have uncontrolled, drug resistant epilepsy by definition. They have a poor quality of life, often difficulties in school and in play and at home and the whole family suffers from the consequences,” he said.
“Recurrent seizures are damaging to the developing brain and such severe seizures are associated with a risk of status epilepticus and death. Every avenue must be explored in an attempt to alleviate the seizures. Cannabis is not a cure-all and is not the right medication for every child (or adult). However, it has been shown to have efficacy in many cases and is generally remarkably safe.”
“The system needs to change” – Father desperate to access medical cannabis for his disabled son
Elliot Cotter, 10, has autism and Downs syndrome as well as suffering up to eight seizures a day.
A Scottish father has spoken about his desperation to access medical cannabis for his son, who is experiencing up to eight seizures every day.
Elliot, 10, who is non-verbal, has autism and Downs syndrome as well as epilepsy. He has chronic kidney disease which is currently under control with medication. He began having seizures around four years ago but it took doctors over a year to diagnose him.
Elliot currently experiences four different types of seizures including tonic-clonic, reflex, atonic and absence seizures, suffering up to eight episodes a day, despite being on different medications.
The family home in Fife has had to be safety proofed with foam and pillows to make sure that Elliot doesn’t hurt himself when he falls. Thomas has also added CCTV which means he has video proof and a record of the number of seizures that Elliot is experiencing. He estimates that he has had 120 seizures in the past month alone.
His father, Thomas Cotter, is desperate to try medical cannabis as an alternative to some of the more invasive procedures that have been suggested by Elliot’s doctors.
Speaking with Cannabis Health, he said: “It was about four years ago when he was just dropping all the time. I ended up getting CCTV and keeping an eye on it because he is non-verbal and doesn’t speak. Then one day, it happened in front of me where he just fell for no reason. I realised something wasn’t right.”
He continued: “When we first got the medication, it worked for his tonic-clonic seizures, which stopped instantly and we didn’t have any for months. But he was still dropping all the time, so he ended up on others to try and calm things down, but they never eliminated the problem.”
Elliot’s mother passed away from lung cancer in 2015 so Thomas is currently caring for his son on his own.
“I feel like I’ve got post-traumatic stress disorder (PTSD) but you just have to get on with it,” he said.
“It is soul-destroying though. Every morning I get up like a meerkat and it’s not if it’s going to happen, it’s when. You are just waiting for [the next seizure] 24/7.”
Seizure control and medical cannabis
Thomas has been heartbroken watching the effect that the many different medications have had on his son. Elliot currently takes 3 medications per day including tablets and oral syringes.
“He goes to school like a blank page, he is just expressionless,” he said.
“His quality of life is terrible.”
Thomas became interested in medical cannabis after reading about Karen Gray’s son, Murray, who has Doose syndrome another form of epilepsy where patients can suffer multiple seizures a day. He uses cannabis-based medication and as a result has been seizure-free for over two years.
Research published earlier this year by Drug Science also found that medical cannabis has a 96 percent chance of significantly reducing seizures in children with severe epilepsy.
As Elliot faces more invasive and stronger medication, Thomas is desperate to give medical cannabis a try.
“I started looking into it and so many people have tried everything else and then switched to cannabis oil and it worked for them,” he said.
“If it worked for them, then there is a good chance it could work for him as well. But trying to get a chance to try or permission to do it is difficult.
“I have no problem with the NHS, they are doing what they are trained to do. It’s the system that needs to change. I mentioned it to [Elliot’s medical team] months ago and they wanted to see how the different medications go, then I mentioned it to them again and they said we needed to get to the maximum level before we try other things.”
Seizures and surgery
Some of the other options that have been suggested for Elliot include placing a tube into his stomach so that Thomas can administer the medication directly. This would give the doctors a better idea of how much medication is being absorbed by Elliot’s system.
But Thomas is unhappy that this invasive procedure is being considered before trying medical cannabis oil first.
“Cannabis oil has been shown to help children so they should go for that first. I’ve decided to go to a private clinic to try to access it. It may not work but it’s a better option than going any further with any medication, especially operations. Especially during Covid-19, as a hospital is the last place you want to be,” he said.
As cannabis-based medicines are still not widely available on the NHS, patients like Elliot and their families are forced to fund private prescriptions which can cost up to £1,40o a month.
Thomas’s neighbour has now set up a Go Fund me for Elliot to help pay for his medical cannabis prescription and consultant fees.
Thomas added: “I just thought I would manage somehow, but they made me realise I would need some help. I’m glad but I was too proud to ask.”
CBGA may be ‘more potent’ than CBD against seizures in Dravet syndrome
Dr Lyndsey Anderson said there is more to explore when it comes to creating more treatment options for Dravet syndrome.
Scientists say they have found the ‘Mother of all cannabinoids’ which may help to reduce seizures in Dravet syndrome.
A new study on mice from the University of Sydney found that three acidic cannabinoids found in cannabis reduced seizures in Dravet syndrome, an intractable form of childhood epilepsy.
The three cannabinoids are cannabigerolic acid (CBGA), cannabidivarinic acid (CBDVA), cannabigerovarinic acid (CBGVA). All three but CBGA in particular “may contribute to the effects of cannabis-based products in childhood epilepsy” noted the researchers and were found to potentially have ‘anticonvulsant properties.”
The study marks the first time that three acidic cannabinoids were found to potentially help reduce seizures for Dravet syndrome.
Speaking with Cannabis Health News, the lead author of the study, Dr Lyndsey Anderson, said: “We found that CBGA exhibited both anticonvulsant and pro-convulsant effects. CBGA was more potent than CBD against febrile seizures in a mouse model of Dravet syndrome. We also found that a combination of CBGA and clobazam was more effective than either treatment alone. Additionally, we found that CBGA was anticonvulsant in the maximal electroshock acute seizure model, a model for generalized tonic-clonic seizures.”
She added: “CBGA did, however, present some proconvulsant effects. The frequency of spontaneous seizures in the mouse model of Dravet syndrome was increased with a high dose of CBGA. Also, CBGA was proconvulsant in the 6-Hz acute seizure model, a model of focal, psychomotor seizures.”
Although CBGA shows promise, Dr Anderson also stressed that it needs more research before it can replace CBD. She cautioned that Dravet syndrome patients may still need to proceed with caution.
“Artisanal cannabis-based products are believed to reduce seizures in Dravet syndrome patients,” she said. “As these oils contain rare cannabinoids like CBGA, it is possible CBGA then contributes to the anticonvulsant effects of these artisanal cannabis oils. However, there were proconvulsant effects observed with CBGA, suggesting that Dravet syndrome patients may need to proceed with caution. The proconvulsant liability of CBGA would need to be addressed before it replaced CBD as an anticonvulsant.”
What is CBGA?
Sometimes referred to as ‘the mother of all cannabinoids,’ CBGA is the precursor molecule to many different cannabinioids including CBD and THC. It is thought to help some diseases such as colon cancer, metabolic disease and cardiovascular disease. It is a non-intoxicating cannabinoid much like CBD.
Dr Anderson explains that more research is needed to explain how the three cannabinoids work together.
“We don’t know how they work together yet,” she said. “We found that CBGA, CBDVA and CBGVA were all individually anticonvulsant against thermally induced seizures in the mouse model of Dravet syndrome. We did not investigate whether a combination of these three cannabinoids would result in a greater anticonvulsant effect than either cannabinoid alone. Future work will definitely explore this possibility.”
CBGA future research
This isn’t the end of the research into CBGA for Dravet Syndrome. Dr Anderson said there is more to explore when it comes to creating more treatment options for Dravet syndrome.
She said: “Next on the horizon for this research is to explore whether the anticonvulsant properties of CBDVA and CBGVA translate to other seizure types including spontaneous seizures in the mouse model of Dravet syndrome. Additionally, we have extensively interrogated the anticonvulsant potential of individual cannabinoids and identified ten with anticonvulsant properties.”
“We are now interested in investigating what happens when we combine these anticonvulsant properties. It remains an open possibility that greater anticonvulsant effects are achieved when the cannabinoids are administered in combination.”
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