Cannabis medicine was Tannine’s last hope when she boarded a plane to the Netherlands with her severely epileptic daughter. But now Brexit regulations threaten to take that away, she tells Sarah Sinclair.
Indie-Rose, now six, had her first seizure in her high chair at four months old.
“I’d never seen anything like it in my life. I was petrified I didn’t know what to do,” says Indie’s mum Tannine Montgomery.
Doctors reassured Tannine it was just a febrile convulsion, a fit that can happen in babies as a result of a fever or spike in temperature. Although she was shaken by it, she wasn’t overly concerned.
“I was really scared about what I had seen, but we took her home and I thought to myself she’s going to be fine, it’s just one of those things,” she says.
“But Indie didn’t stop seizing. The seizures progressed quickly and she was soon having a lot of them. We were constantly calling an ambulance.”
Even when doctors told Tannine that they thought her daughter had epilepsy, she was still hopeful that she would lead a normal life.
“I knew nothing about epilepsy at the time, I’d never seen anyone have an epileptic seizure, but I thought we would get some medicine and Indie would be able to live a normal life. I was quite hopeful that’s what would happen,” she admits.
Indie was prescribed various antiepileptic drugs, none of which managed to keep her seizures under control, and underwent a number of tests, from MRI scans to lumbar punctures while still just a few months old.
Her doctors eventually discovered a gene mutation related to Dravet syndrome, a rare but severe form of epilepsy, which along with uncontrollable seizures causes a number issues such as cognitive decline, hypermobility and problems with movement and walking.
By the age of two Indie had begun to show signs of Dravet syndrome, her development had halted and she lost her ability to talk, but it was the contrast seizures which were leaving her most at risk.
“By the time Indie was three, we were eight antiepileptic drugs down and still nothing stopped her seizures,” says Tannine.
“We were still calling ambulances constantly and I just couldn’t see that for her for the rest of her life.”
For the next year Tannine dedicated any spare time that she could to researching medical cannabis.
“I’d heard it could help but if I was going to give it to my daughter I wanted to make sure I was giving her something safe and I wanted to make sure that I was being legal – I didn’t want to risk my daughter being taken off me,” she says.
Tannine eventually met the founders of a UK CBD company, who showed her around the facility, explained the extraction process and gave her some oil to try with Indie.
“For three weeks it sat in my cupboard, because I was too scared to use it,” she remembers.
“Finally, Indie had this awful night with so many seizures. I opened the cupboard to get her normal medication and saw the CBD oil. I thought, ‘I’ve got nothing to lose’.”
Ten days later Indie ran down the garden for the first time.
“It was amazing, we’d never seen her run,” says Tannine.
“Indie’s dad and I, just looked at each other and realised this stuff was actually helping her.
“From that point on we started trying to get her a prescription, so we had guidance from doctors and could make sure we were giving her a therapeutic dose.”
With cannabis still illegal in the UK, even for medical purposes, Tannine contacted the Erasmus Hospital in Rotterdam, where a paediatrician agreed to prescribe Indie the whole plant cannabis oil Bedrolite.
With Indie’s condition at its worst Tannine left her eleven-month-old son with his grandmother and travelled to the Netherlands in a bid to save her daughter.
“She was having seizures on the aeroplane. I was petrified, but I felt like it was my last hope,” she says.
“As much as people could say it was unsafe to take her, Indie had seizures every day. I would never have got her out of the country and I needed to get access to this treatment.”
The next day Tannine took Indie to her appointment with the pediatric neurologist and collected her prescription from a local pharmacy.
“It was just a regular pharmacy selling paracetamol and other medicines, it was amazing that we could just go to the pharmacy and collect it,” she adds.
After one day on the medicine Indie slept through the night. After four days she had had no seizures at all. When Tannine’s partner arrived to join them with their son, Indie played with her little brother for the first time.
“I remember him standing at the doorway of this Airbnb and she ran up to him to tickle him. Up until then it was like she hadn’t even known he existed,” says Tannine.
“We could see straight away how this was helping her interact and function so much better.”
The family put their lives on hold and spent three months in the Netherlands, unable to return to the UK with Indie’s medicine. Tannine describes the experience as like “living in lockdown”.
“We were there for just over three months, but it felt like forever,” she says.
“It was traumatic, it certainly wasn’t a holiday. We didn’t have money to spend on sightseeing, it was all for Indie’s medicine and the whole time I was fundraising to be able to afford to keep her on it, because it’s not cheap.”
Eventually Indie was granted a licence to import Bedrolite to the UK through a private prescription and in November 2018 the law changed to legalise medical cannabis.
But Tannine continued to campaign for NHS access, with no option but to rely on donations for Indie, having spent over £30,000 on her prescription fees to date.
It was this that drove her to launch her own CBD company last year to help fund Indie’s medicine, as well as supporting others in similar circumstances.
“Unfortunately, when a bottle of Bedrolite oil is £160 for 10ml and your child’s using two of them a week, that’s not attainable for anyone who’s just holding down a normal job,” she says.
“I didn’t feel like I was getting anywhere with the government and I didn’t want to have to rely on fundraising forever.”
Tannine saved up out of her benefits and began making her own products, using a 10 percent cannabis oil, similar to Bedrolite, but with lower levels of THC and legal in the UK.
“I had a lot of good feedback and that’s when I decided that this is something I could do to provide Indie with what she needs and help people at the same time,” she says.
“I wanted to create an authentic company built on love for my child and my desire to help other people who have to suffer the way she does.
“This isn’t prescription medication, but each person is so individual in what works for them when it comes to cannabis, it’s always worth trying something. When I get a text message from a mother who says her daughter stood up for the first time, it makes my day.
“There isn’t anything in this world that can make me feel better than improving a child’s life.”
Indie hasn’t been hospitalised for three years since she began taking the Bedrolite, she hasn’t needed any rescue medication or pharmaceuticals and last year her attendance in school was 96 percent.
However Brexit has left Indie and dozens of other patients without access to the life-saving medication.
The family were given just two weeks notice after the Department of Health and Social Care (DHSC) sent a letter to importers, clinics and patient groups, stating that prescriptions issued in the UK ‘can no longer be lawfully dispensed in an EU Member State’ from 1 January, 2021.
Those prescribed Bedrocan oils through the Transvaal pharmacy based in the Netherlands, have been advised to find “alternatives”. But as many experts have warned, switching these children’s medications could be life-threatening.
Plant and cannabis expert Dr Callie Seaman told Cannabis Health that with over 565 different secondary metabolites in cannabis plants, each batch is subtly different, let alone each product or supplier. And consistency is vital in the treatment of severe epilepsy.
“For patients taking medical cannabis for palliative care and other diseases, a switch in oil is not the end of the world, but what’s needed with epilepsy is consistency,” she explained.
“Any neurologist will tell you that when you find something which works, you have to stick with it. As soon as you start changing things that’s when the issues arise, and any seizure comes with the risk of death.”
Indie still lives with disabilities as a result of her condition, but the seizures she has are much less severe.
The fact her medication is at risk is an added worry for Tannine, who says if the legislation surrounding the import of cannabis medicines from the Netherlands doesn’t change they fear her condition could worsen.
“She’s doing so much better than she was,” she adds.
“I couldn’t dream of taking it away from her now.”
Lara Parker: “It’s hard to overstate the impact cannabis has had on my life”
For Endometriosis Awareness Month, Cannabis Health caught up with LA author and editor Lara Parker about living with the condition and finding relief in cannabis.
When BuzzFeed editor Lara Parker opened up about living with endometriosis in an article in 2014, she learned that there was power in numbers.
She received the diagnosis less than a year before. But she had been battling excruciating cramps, painful sex and a raft of other debilitating – and unexplained – symptoms since her teens.
It took seven years for Lara to be diagnosed with endometriosis. If that seems like a long time, it’s not, relatively speaking. Seven and a half years is the average length of time it takes for a patient to be diagnosed, despite the fact that the condition affects one in ten and around 1.5 million women in the UK.
Since that first article Lara has become something of an icon for tens of thousands living with endometriosis and chronic illness – particularly women who feel silenced, disbelieved and let down by gender bias in the medical system. In 2020 her first book came out, aptly named Vagina Problems, chronicling her journey in an attempt to provide for others what she wished had been available to her.
But there’s another reason Lara’s 50,000 plus Instagram followers show up (apart from the steamy shots). She openly, unashamedly, shares the therapeutic effects that cannabis has on her symptoms and overall health and wellbeing.
Living in Los Angeles she has widespread access to legal cannabis, but has still faced stigma and hid it from her doctors initially.
Speaking to Cannabis Health, she reveals how the plant has changed her view of conventional medicine and helped her take control of her own health.
CH: Can you tell me a little bit about your current diagnoses and what the journey was like to get to this point?
Lara: My current diagnoses are endometriosis, adenomyosis, and overall pelvic floor dysfunction. It was a really long and difficult journey to receive these answers. I started experiencing severe symptoms that were disrupting my life when I was just a teenager — around 15 years old. It wasn’t until nearly six years later that I was given my first diagnosis of endometriosis after insisting that a doctor perform a laparoscopic surgery. Since then, it’s been a constant uphill battle to not only find doctors who are knowledgeable about these conditions, but who believed that I deserved relief.
CH: How is your health at the moment and how do your symptoms impact your day to day life?
Lara: My health is up and down. I had a second surgery in January of 2020 to treat my endometriosis and my appendix was removed during this procedure. In some ways, I notice a positive change in my health since the surgery, but in many other ways, I am still struggling.
I was put on an excessive amount of prescription drugs prior to the surgery and have spent the last eight plus months attempting to wean off of them. This has added so much stress and symptoms onto my life.
In the midst of COVID-19, I was living in the epicentre of the world for the virus for several months. I had to forgo getting care for my illnesses because of my fear of getting COVID and adding yet another health issue on top. The reality of the situation is that there is no cure for endometriosis. I am maybe better than I have been in the past, but I am still at the bottom of a mountain trying to climb my way to the top.
CH: How did you first discover the medicinal benefits of cannabis?
Lara: It was by accident, really. I just happened to be dating someone who enjoyed smoking cannabis and would do it fairly often. One day, I was having a horrific pain day when he suggested I try it out and see how I felt. The relief was immediate. I had never experienced anything like it before. After that I began to explore more. I went to dispensaries and asked them questions and I tested out any products that I could get my hands on.
CH: How has it improved things for you?
Lara: The better question would be how hasn’t it improved things for me? Cannabis has given me an appetite when absolutely nothing else has, it has given me an ability to orgasm in the midst of pelvic pain, it has helped my stress and anxiety levels in the midst of dealing with chronic illnesses, and has helped my pain levels like nothing else ever has. It’s hard to overstate the impact that cannabis has had on my life.
CH: Did you speak to your doctors about it and were they supportive?
Lara: At first, they were not. I was so excited to have found something that genuinely seemed to help me that I could not understand why my doctors weren’t feeling the same enthusiasm. I sort of stopped bringing it up and almost consumed it in secret for a while, but the more I experimented with it and the more it helped me, the more angry I became.
I eventually chose to stop seeing any of the doctors who were unsupportive of my cannabis use. Now, when I assemble a new team of doctors or visit a new one I am very firm. I use this plant. It helps me. If you have a problem with that or make condescending comments about it, I will walk and I will no longer be a patient of yours – and I will make sure no one in my circle is either.
It’s past time for doctors to realise the medicinal benefits that can be found in this plant.
CH: Has it changed your opinion on pharmaceutical drugs and conventional medicine?
Lara: Yes, unequivocally. I was never a huge fan of ‘big pharma’ prior to discovering cannabis simply because it never really seemed to work for me. I was always left with an intense side effect or two which would then have to be treated with more pharmaceutical drugs. I was starting at a level of being in pain and felt like I just kept adding on layers and layers of other issues and it was extremely demoralising.
I support ‘big pharma’ if it works for you, it’s absolutely someone’s own personal choice. What bothers me, however, is that many people aren’t even allowed access to cannabis to even see if it could help them in place of pharmaceuticals. It’s quite disgusting, really and I hope I see it change in my lifetime.
CH: Living in LA where cannabis is easy to access, how does it make you feel that many other patients don’t have this?
Lara: It’s enraging. It’s mind-boggling that we have access to such an amazing plant and that others don’t simply because their elected officials don’t know how to read books and use their brains.
CH: You’re very open about your cannabis consumption, have you experienced stigma because of it?
Lara: Certainly, but not at a level that someone who was not white would, I am sure. I grew up in a very small, conservative town in the midwest and a lot of people there still associate cannabis with being some sort of murderer or dangerous person. This past weekend, actually, my parents received an anonymous note in the mail with a bunch of pictures of me smoking cannabis with the words “Are you proud?” written on each one.
CH: As someone with a large following on social media, how do you deal with people offering unsolicited advice and telling you how to manage your own health?
Lara: I have had to learn how to set boundaries and stick to them. I have had so many people get angry with me simply because I say to them, ‘I didn’t ask for your medical advice, and I don’t want it’. But it’s been absolutely crucial for me to do so. It’s very difficult to be inundated with commentary on your body constantly. If I wanted advice or help, I would certainly ask for it.
CH: You’ve chosen to use your platform to help others, what impact does that have on you as a patient yourself?
Lara: It has given me the greatest gift of all; to know that I am not alone and that no matter where I am in my struggle, someone else is right there with me. There is power in numbers and I believe that our community is just getting started.
CH: What needs to change about how healthcare treats people with endometriosis and other invisible conditions?
Lara: So much, we need a complete rehaul of medicine. We need patient-forward care. We need holistic approaches. We need medicare for all. We need western doctors to drop the narcissism and admit that they actually don’t have all the answers, not even close.
CH: What is one thing you would like people to know about endometriosis?
Lara: It is a whole body disease that impacts every single part of someone’s life. It needs to be treated as such.
Vagina Problems: Endometriosis, Painful Sex and Other Taboo Topics is available now.
Follow Lara on Instagram @laraeparker
“I experienced peace I’d never felt before”: The African encounter which inspired a CBD empire
Suffering with a severe fever while in Kenya as a teenager, Paul Shrive was given a cannabis-based brew by a local. He not only recovered from the illness, but experienced mental clarity for the first time in his life, he tells Cannabis Health.
Paul Shrive, founder of Leafline CBD, had a challenging childhood. He would frequently get in trouble with his schoolteachers and was bullied by his classmates for being “different than everybody else”.
“It was a very, very difficult and traumatic time for me at school,” Paul recalls, speaking to Cannabis Health.
“Teachers used to look at me as a problem child, because when somebody was screaming at me, I just couldn’t take it; it was like I was being attacked.”
Although he has never been formally diagnosed, Paul has been told unofficially that he is on the autism spectrum, which has meant he experiences his senses differently to most people.
“Everything just goes a zillion miles per hour,” he explains.
“Something wasn’t right, but I spent my life thinking it was just me, that it was just who I was. But there was actually something out there that could make it better, I just didn’t realise it at the time.”
In 1986, when Paul was fourteen years old, his father was offered an opportunity to come out of retirement and travel to Africa to carry out work on a food manufacturing plant that he had helped set up a decade previously.
Paul was given the choice of either going to Africa or staying in school in the UK. Given the difficulties he was experiencing with his teachers and fellow pupils, Paul jumped at the opportunity and boarded the plane to Nairobi with his Dad.
Over the next nine months, Paul came to discover cannabis, which he says was part of everyday life in Kenya despite its illegality.
Paul remembered walking around the outskirts of Nairobi and seeing small children picking a mysterious plant.
“I started noticing these little kids in fields picking plants and filling up these clear bags,” Paul says.
“I wondered what they were doing.
“I got back into Nairobi centre and around the markets I saw the same boys, around eight or ten years old. My Dad told me they were shoeshine boys.
“I noticed that they had dozens of these bags around the waist – I know now that they were bags of cannabis; pure hemp growing everywhere in the fields.
“Businessmen would have their shoes polished and buy these bags and take them to their wives, because they use them for cooking, they use it as herbal remedies – it’s part of their everyday life.”
Not long after arriving in Africa, Paul became ill, catching a serious bug causing an intense fever that continued to rise despite being seen by a number of doctors. He was hooked up to a drip in his hotel room while doctors attempted to cure him through various treatments.
A British chef working at the hotel heard about Paul’s situation and approached his Dad. He believed, as the boy was suffering from an African illness, it would require African medicine to treat.
“I was delirious,” Paul says. “I was all over the place. I really wasn’t well.”
“They had a chat with one of the major tribes in the area and asked if they could help me.
“I don’t know exactly what happened, but I know that I was visited by a ‘witch doctor’ or ‘shaman’ of some kind.
“The next thing that I remember is my father waking me up. He had a clay vial in his hand containing a black and gloopy kind of liquid. It had had alcohol and pure hemp in there.
“I was out for the count completely for more than a day, but while I was knocked out, my temperature started to drop, and drop, and it allowed me to heal.”
Many people, including his father, believed his recovery was purely coincidental, but Paul says it didn’t matter whether it was or wasn’t. What struck him when he regained consciousness was how clear his head was.
“When I came around, for the first time ever, I experienced peace that I’d never felt before,” he says.
“I felt normal. There was nothing that agitated me, I could sit there without fidgeting, I could sit there without having to worry, or feel as though I had to put my hands over my ears.
“When you’ve had a whole life of what you feel is torture, it was a revelation to find that kind of peace and tranquillity.”
For the remainder of his time in Nairobi, Paul was provided with a less potent form of the concoction without the addition of alcohol. He consumed a small amount twice a day. As it contained THC, Paul remembers feeling a rush from the medicine, but it was manageable.
“I could think and I could hold a full conversation. I could look at people in the eye and totally hear what they were saying,” he adds.
On his return to the UK, Paul says he had a “short, sharp shock” when he discovered that the plant was illegal. As a young teenager, he was unaware that people were using cannabis for recreational purposes. With no access to the plant, Paul says he suffered for a number of years.
When CBD began to see an increase in popularity several years ago, Paul was quick to launch his own business, Leafline CBD with his wife Sonia, who has her own journey with the supplement. Suffering with PMDD (post-menstrual dysphoric disorder), a severe form of PMS, Sonia’s doctor prescribed her a low dose of anti-depressants.
Paul suggested to his wife that she try CBD to manage the symptoms instead, so she started taking an oil every morning and night and over time, her symptoms subsided.
“The last thing I wanted, was a pharmaceutical drug to treat it,” says Sonia.
“PMDD isn’t a mental problem, it is a hormonal problem.
“For PMDD sufferers, it last for between 6 days and 3 weeks every month which is no fun at all. I still have symptoms, don’t get me wrong, but they are for a smaller amount of time and symptoms are not as intense since taking CBD. ”
Like the rest of the UK’s CBD sector, Leafline are preparing for the Food Standard Agency’s Novel Food Applications which close on the 31st March.
But as a firm believer in the power of whole-plant extract since his experiences in Nairobi, Paul is fearful that full-spectrum products will no longer be permitted following the deadline.
“Isolate-based [CBD] does have a purpose, it does have a mode of action, but the true goal is whole-plant and I’m really scared because I think it’s going to be taken away from us,” he says.
“Unfortunately, by doing that, it that will create a black market. I’ve had somebody that has been on whole-plant for a long time and then when we gave them an isolate tincture, it didn’t work.”
Paul adds: “You can’t mess with nature. Leave nature alone and nature will do its job.”
“At 83, CBD gave me my spirit back” says grandmother-of-two
Carla Shrive suffers from severe arthritis along with other health issues. When the pain started to impact her sleep, day-to-day life and wellbeing, her son stepped in and introduced her to CBD.
Now, the 83-year-old grandmother-of-two is off all prescription medicines apart from paracetamol and is managing her health conditions through CBD alone.
“About three years ago, I joined Slimming World,” Carla recalls.
“I had put weight on and was feeling really down. When I joined, there were tears in my eyes because I felt ashamed of myself for how big I was.
“I started to go to the sessions, but I was very much in pain. I had to do something about it because my bones were so painful; I couldn’t walk at the time.”
Her son, Paul Shrive, who runs the company CBD Leafline, recognised how much discomfort his mother was in and recommended she try CBD.
“She was taking tablets for arthritis pain and blood pressure, her hair was falling out, and she used to take a minimum of eight paracetamol a day,” Paul says.
“It got to a point on one day where she couldn’t get out of bed as her knee was all inflamed. She was in absolute agony, getting barely any sleep and her diet was all over the place.
“She was really suffering.”
Paul gave his mother a 1000mg tincture of whole plant CBD and told her to take twice a day.
“My son came to me and said ‘look, mum to help you out with your pains, I’ve found you some CBD so you might try it’,” Carla continues.
“I was curious about it; I wanted to know more, so I read some leaflets and because I have great faith in my son, I trusted his recommendation.”
After just four days, Carla started to see improvements to her health. She was having a full night’s sleep for the first time in months, her complexion improved and the arthritis in her hands started to get better.
Several months after her first dose of CBD, she is walking again and finding daily tasks such as cooking much easier.
“It’s marvellous, 18 months ago, I couldn’t walk like I do, I wasn’t very happy at all and hated all the medication I was taking,” she says.
“But since I started CBD, there has been no need for it.
“I’m walking a lot now, which I couldn’t do before and the pain just isn’t there anymore. It’s nagging from time to time, but it doesn’t bother me as much at all.”
Carla says she has her “spirit back” since taking CBD and believes it has given her a “new life”.
“I feel happy; it’s given me a great chance to live again,” she adds.
“At 83, I feel young, especially at heart.”
- “I feel hugely let down by the system”: Patients fall victim to UK’s cannabis supply issues
- Does CBD affect endometriosis?
- “CBD allows me to function” – biker ‘died’ three times after freak road accident
- How much CBD should I take?
- My experience as a medical cannabis prescriber on Project Twenty21
- More than half Americans don’t know the difference between CBD and THC
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