UK family who lost daughter to SUDEP unable to access medical cannabis for son

Estimated reading time: 8 minutes

A family who lost their daughter to SUDEP, is now faced with moving overseas to access medical cannabis for her younger brother, who suffers from the same rare condition.

Having a child diagnosed with a rare form of intractable epilepsy is devastating for any parent, but to have it happen twice, is unimaginable.

Jess Clatworthy’s daughter Lola was only three months old when she started having seizures. 

“We didn’t know it was a seizure at first, but I knew it wasn’t normal, even though all the tests came back fine,” says Jess, a paediatric nurse herself, who had been growing concerned about her daughter’s lack of development.

“While we were waiting to see a paediatric neurologist through the NHS, we booked a private appointment. The doctor said she couldn’t see any red flags and thought it was just a reflux issue. We should have been happy, but I just had a feeling that something wasn’t right.”

The family were driving back from the appointment in London when Lola had another seizure in the car – and then another when they arrived in A&E.

“When you suddenly have 20 doctors around your child with resuscitation equipment, you realise that something is seriously wrong,” recalls Jess.

“Lola was put on an anti-epileptic drug and we were told that with the first drug you have quite a good chance of getting the seizures under control, so we left quite optimistic. But looking back now for all we know it actually made things worse.”

Lola and Alfie with their older sister

For the first year of her life, Lola was in and out of hospital and was prescribed more and more medications.

Jess continues: “She had around 12 hospital admissions within the first nine months of her life.

The seizures got more aggressive and she could have up to 200 a day sometimes, all different types.”

When Lola made little improvement on the anti-epileptic drugs, and then the ketogenic diet, Jess started looking into cannabis, and particularly CBD.

“We had no genetic diagnosis for Lola, so we were just in no man’s land, with no one to tell us what works,” she remembers.

Jess bought a bottle of Hayleigh’s Hope CBD oil, but it sat in the cupboard for a month before she plucked up the courage to give it to Lola. 

“There was a lot of anxiety because we were doing something that had not been prescribed by a doctor. I didn’t want to make things any worse or put her at risk,” she says.

“I didn’t really see any difference, but I was so cautious with it, I don’t think I ever really gave it a chance.”

After several more unsuccessful drug trials, Lola was prescribed steroids, which worked well. Jess says never saw her daughter have another seizure for five weeks. But sadly aged two, Lola died in her sleep of SUDEP [the sudden, unexpected death of someone with epilepsy].

“I don’t think she had a seizure,” says Jess. “I could always tell when she’d had a bad night, but she just looked like she had gone to sleep and not woken up. I think it was very quick and peaceful. I think it was just her time.”

She adds: “It was so hard but at least the last five weeks of her life she was at home and the best she had ever been.”

The worst case scenario

Jess’s son Alfie was only five days old when his sister passed away. After what they had been through with Lola, Jess and her husband were naturally more anxious this time around.

“We were worried, but we were told the chances of having another child like Lola was like being struck by lightning. There is only a four per cent chance of reoccurrence when there is no diagnosis,” says Jess. 

“But exactly the same time, almost to the day, Alfie had a febrile convulsion and I just knew. It was exactly the same happening all over again. 

She continues: “Our doctor tried to reassure us but as time went on, it escalated quite quickly into hundreds of little jerks a day. 

“We were just devastated. This doesn’t happen to most people even once, to have it happen twice is just unimaginable. It was our worst case scenario.”

CRELD1

When Lola was around 18 months old, Jess had made contact with a parent in Canada through Facebook, whose son and daughter both had a genetic form of epilepsy associated with the CRELD1 gene.

“She had shared a video of her daughter having a seizure, and she looked quite similar to Lola, the seizures looked the same,” says Jess.

“We have almost identical histories with our children.”

The couple repeatedly asked doctors to test Lola for CRELD1, but were told that she had been tested for everything and it would not be this gene. It wasn’t until the same symptoms began  appearing in Alfie that they took their requests seriously and diagnosed CRELD1 epilepsy in both him and Lola.

Alfie was born with the same rare condition as Lola

The condition is extremely rare and is genetic, with a 50 per cent chance that a carrier will pass it onto their children.

Turning to CBD

The family in America had seen huge success with CBD oil and managed to get their son’s seizures down to one every couple of weeks. When Alfie’s doctors in the UK prescribed the same course of treatment as they had with Lola, Jess intervened to avoid seeing history repeat itself. Alfie was four months old when she started giving him small doses of CBD.

“As soon as I came back from the hospital, I started the CBD that I had in my cupboard,” she says.

“It didn’t have the immediate effect of stopping the seizures, but things never got quite as bad as they were for Lola. The only time he has been in hospital was when he had a febrile convulsion, he hasn’t had any other admissions.”

Jess has been managing Alfie’s condition with CBD oil for the last few months, accessing support and advice from other parents on Facebook and through organisations like MedCan Support.

Although Alfie’s doctor has been supportive and open to discussing CBD as a possible treatment option, the only option available through the NHS is Epidyolex – and even then it is only prescribed to children with Dravet syndrome or Lennox-gastaut syndrome, who are over  the age of two.

“I am much braver with the higher doses now,” she says. “Obviously, it’s something I would much rather do under the guidance of a doctor, but I don’t think at his age it’s really an option for us.

“I watch him closely and I would know if it was having any negative effects. You just try to keep your child safe and to look out for every little thing that you think is working.”

 Lack of access

Although Alfie’s condition is better managed, he is still having around 20 seizures a day. Jess wants to explore the option of full spectrum cannabis for him, having read and heard about the benefits of THC.

But access to cannabis prescriptions in the UK for children with epilepsy is extremely limited – despite it being legalised in 2018.

There is currently only one paediatric neurologist prescribing cannabis in the UK and he is no longer taking on new patients due to demand.

The British Paediatric Neurology Association (BPNA) has been accused of attempting to block access to medical cannabis, publishing guidelines that prevent its members from prescribing. 

It claims that there is “no evidence” for the safety and efficacy of medical cannabis products and that there are “concerns” about the effect of exposure to THC on the developing brain.

With it unlikely she will be able to access a prescription in the UK, Jess is now considering travelling abroad to access the treatment. 

High profile campaigners, such as Hannah Deacon, travelled to Holland in 2017 to access medical cannabis for her son Alfie. It was this story that put pressure on the Government and helped change the law.

But many thought we had moved on from this, with around 150 children prescribed cannabis legally in the UK, the majority of whom are thriving and several seizure free.

A number of studies have been conducted by Drug Science, the latest of which published at the end of last year revealed that seizure frequency fell by 86 per cent in children with intractable epilepsy, who were using medical cannabis.

“Every child in the US with my son’s condition is on CBD of some form,” she says. 

“It seems unfair that just because you live in another country you don’t have access to this medicine.”

She adds: “I would be willing to take my family abroad, we’d find the money from somewhere. I’m willing to take the risk because we know what we’ve got to lose. We’ve seen the worst thing that can happen.”

Holding onto hope

Had they had had Lola’s diagnosis sooner, Jess feels she may have been more comfortable with giving her the CBD oil – and that it may have helped her too. 

“That’s what has made the difference for Alfie, I know it has. I’m seeing improvements in him that I never saw from Lola – I never truly thought she was happy,” she admits.

“He’s getting so much more out of life, he is so much happier, he interacts with us and that’s what keeps us going.”

Jess adds: “I’m not going to sit back and watch Alfie have the same life as his sister. You never give up on your children and you never give up hope that one day you will stop the seizures.”

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