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.”
You can find the fundraiser here
The post “The system needs to change” – Father desperate to access medical cannabis for his disabled son appeared first on Cannabis Health News.
