A clinical trial of cannabidiol (CBD) for Dravet Syndrome was conducted in London at the Great Ormond Street children’s hospital and at centers in Europe and the US. Now, the results are out, proving what parents who have given their kids CBD Dravet Syndrome treatments have been saying for years.
Parents pushed for trials
Researchers started the trials because of parents telling amazing stories of improvements in their children’s’ health after using cannabis derivates bought via the Internet. The Guardian spoke to role players and experts about the results of the trail.
A consultant in pediatric neurology, Prof Helen Cross, at Great Ormond Street said that there are many cannabidiol and epilepsy stories on the Internet. This led to the careful formulation of a pharmaceutical form of cannabidiol, containing almost no THC, the psychoactive compound in cannabis.
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The trial included 120 patients with a rare form of severe epilepsy, which causes life-threatening convulsions every day. The patients’ ages ranged from two to 18 years old. The average age of the CBD Dravet Syndrome test subjects was nine.
These patients randomly received liquid cannabidiol or a placebo twice a day. No one knew which patients were getting cannabidiol. This is called a double-blind trial, and scientists see it as the most convincing way of testing a hypothesis.
CBD Dravet Syndrome subjects: seizures reduced
The results of the study, published in the New England Journal of Medicine, showed an average seizure reduction of 40%. Of the patients on cannabidiol, 43% experienced 50% fewer seizures than before. Three kids, or 5% of the group, had no seizures at all. They reported mild side effects including drowsiness, fatigue, reduced appetite, and diarrhea. These effects are caused by other epilepsy medications too.
Prof Cross said that the seizures returned after discontinuing the treatment. These children will probably have to stay on CBD for life. She said nobody understands the exact reason why cannabidiol works for Dravet sufferers.
Doctors who were involved with the trials believe the treatment could change the lives of thousands of children that other pharmaceuticals couldn’t help. Cannabidiol could also help children and adults with more common forms of epilepsy. One in every 40,000 kids in the UK is affected by Dravets.
Doctors are concerned about epilepsy medication containing sodium valproate. It could cause birth defects, and women and girls are at risk if they fall pregnant. Cannabidiol could possibly be a treatment in these cases says Cross.
More research needed: an old refrain
Samuel Berkovic, from the Epilepsy Research Centre of the University of Melbourne, said this was the first solid data on cannabidiol for epilepsy, but he is waiting for more research results. One can’t help wondering just how much research it will take before everyone finally agrees with CBD Dravet Syndrome families and admits that CBD worked for them.
Meanwhile, the wheels are turning. GW Pharmaceuticals wants to get its CBD Dravet Syndrome drug licensed in the US and later the UK and Europe.