The mother of a severely epileptic child, whose life has been ‘saved’ by medical cannabis, has launched her own CBD brand to help families.
Since 2017 Tannine Montgomery, 31, has been fighting for fair access to medical cannabis treatment for her daughter, Indie-Rose, who lives with a severe form of epilepsy called Dravet syndrome.
Indie-Rose began having seizures at around four months old and doctors never managed to bring them under control.
After three years of weekly ambulance trips to hospital and eight different antiepileptic drugs – all which failed to be effective – Tannine was desperate to find another treatment to improve her daughter’s quality of life.
She set about learning everything there is to know about medical cannabis and CBD.
“I’d heard it could help but I wanted to make sure what I was giving her was safe, says Tannine.
“I was given some CBD oil to try but for three weeks it sat in the cupboard because I was too scared to use it.
“Then Indie had this awful episode, she’d been up all night having seizures and I saw the CBD in the cupboard and thought ‘right now I’ve got nothing to lose’.”
Although they didn’t notice much change in Indie at first, after 10 days of taking the oil her parents watched her run down the garden for the first time.
Tannine adds: “It was amazing, we just looked at each other and said – wow this stuff is actually helping her.”
After years of battling to get access to full extract cannabis oil – including a ‘traumatic’ three-month stay in Holland – after the law change, Indie-Rose eventually obtained a private prescription for Bedrolite.
Now six, she is still severely disabled but is able to attend school and hasn’t been hospitalised or had to receive rescue medication for three years.
But Tannine and her partner, Indie-Rose’s dad, Ant have to raise hundreds of pounds each month for her medicine, while they continue to campaign for access on the NHS.
Their struggle has inspired Tannine to step into the sector herself, with the launch of Sweet Pink CBD, a range of CBD products created in her home studio in Suffolk.
“We weren’t getting anywhere with the government and the fees just aren’t obtainable for anyone holding down a normal job, but I knew that what I had learned over the last few years was probably valuable,” she says.
She started working with Green Leaf Processing, a company producing hemp oil, similar to Bedrolite but with lower levels of THC, so it is legal in the UK – and more than half the price.
“Bedrolite is a prescription medicine but the bottles that I can sell for £60 rather than £160 still help,” she says.
“Through my learning I noticed that not all children respond to the same thing so it’s always worth trying something. Each person is so individual in what works for them when it comes to cannabis.”
After Indie-Rose responded well to the oil, Tannine realised she could help other families, who don’t have access to a private prescription.
“For me, starting the business was about helping people and also giving people the knowledge to help themselves so just talking to people and pointing them in the right direction of where they can find correct information about cannabis,” she continues.
“I hope people feel they can trust me because I was that one once that mum, who desperately needed something to help my child. I felt lost, and I just want to be that person that they can come to.”
After being approached by a friend with a bad back, Tannine saved up out of her benefits to make bath bombs which she distributed to people living with chronic pain and other ailments.
Sweet Pink evolved and now includes CBD oils, balms, massage oils and bath products, all of which are 100 percent vegan, organic and infused with active ingredients and essential oils, such as turmeric, eucalyptus, wild orange and bergamot, chamomile, lavender and pink pepper. She also offers one to one, confidential consultations to create bespoke products for her customer’s personal wellbeing needs.
The money from Sweet Pink will go towards helping fund Indie-Rose’s prescription, but Tannine also hopes to help other families who are struggling to afford the fees.
“I don’t want to just help Indie – there are so many other children in the same situation – and I want people to have fair access, without having to worry about the money,” she adds.
“The plan is to set up a charity so 10 percent of the profits from the company will go to funding children’s medication. That will be accessible to everyone in the End Our Pain group, and all the families I already know, but also other families out there to hopefully help their children.”
CBD dominant cannabis does not influence driving skills – study
Participants showed no signs of impairment when it came to driving but they did test positive for trace levels of THC
A study suggests that CBD-dominant cannabis does not influence the skills associated with driving such as reaction time, concentration, time perception or balance.
The Swiss study examined CBD and THC dominant cannabis flowers to see if they impacted on neurocognitive or psychomotor skills.
Some of the participants were given a CBD dominant strain that had a 16.6:0.9 per cent ratio, and others were given a placebo.
After inhaling the cannabis, participants were asked to undergo the Vienna Test System TRAFFIC. This measures reaction time, behaviour in stressful situations, concentration and performance. They also took further tests to determine their fitness to drive, three separate balance tests and coordination along with vital signs such as blood pressure and pulse.
Driving and cannabis
The participants showed no signs of impairment when it came to driving but they did test positive for trace levels of THC in their blood. The blood tests were taken 45 minutes after consuming the CBD dominant cannabis.
The authors noted that the slight change in THC levels within the system would potentially place patients in violation of traffic safety laws.
The researchers noted: “This finding suggests that higher CBD concentrations cause a negative allosteric effect in the endocannabinoid system, preventing the formation of such symptoms. Nevertheless, it is recommended that consumers refrain from driving for several hours after smoking CBD-rich marijuana, as legal THC concentration limits may be exceeded.”
Driving and THC tests
When it comes to THC and roadside testing, new research revealed that THC levels in blood and saliva are poor measures of impairment.
Researchers analysed a range of studies on the relationship between driving performance and Tetrahydrocannabinol (THC) concentrations in blood and saliva.
The researchers took data from 28 different publications that involved ether ingested or inhaled cannabis. They characterised the relationships between blood and saliva THC concentrations, driving performance and skills such as reaction time or concentration.
When it came to infrequent cannabis users, there were some significant correlations between blood and oral levels of THC and impairments were observed. However, It was noted that these relationships were ‘weak.’
There was no significant relationship noted for the more regular consumers.
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.”
CBD-enriched cannabis oil may reduce seizures in children with West syndrome
Four of the eight children had less than half the seizures they had before the trial.
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.
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