‘Medical cannabis was my daughter’s last hope – I wouldn’t dream of taking it away from her now’

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’.”

Indie-Rose

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.”