CBD Oil for Dravet Syndrome: A Miracle Cure?

CBD Oil for Dravets Syndrome

The American Food and Drug Administration (FDA) recently made cannabidiol available on prescription to people over the age of 2 who have either Lennox-Gastaut or Dravet syndromes, two rare and previously untreatable forms of epilepsy. This was a watershed moment in the progress of CBD from a substance with “no medical value” to a useable drug that has the requisite scientific data to support its safe use.

Across the world, media outlets trumpeted CBD as a miracle cure that could give a new lease of life to the poor children who had previously suffered dozens or scores of seizures a week. As we will see, CBD is neither a cure nor miraculous. That is not to take away from the remarkable and incredibly positive news for these children, but it is an insult to the scientists who did the research to call their work a miracle. There is solid science behind the use of CBD oil for Dravet Syndrome.

Cannabis, CBD and Epilepsy

CBD has been used to treat epilepsy for much longer than people might realize. CBD is one of the 60 plus cannabinoids that are found in the cannabis sativa plant. Cannabis itself has been cultivated by humans for at least 12,000 years, making it one of the oldest cultivated crops on earth. We can only assume that our ancestors at this time enjoyed the medicinal effects because we do not know that they smoked or ate it; they used it as a textile.

However, when written records started to emerge, so too did records of cannabis being used for treating epilepsy. The history of cannabis goes way back. The Chinese emperor Shen Nung (who might or might not have even existed) considered it one of the most important medicinal plants around, including it in his compendium of 365 medicines. This is the earliest record for medicinal cannabis and it does not mention epilepsy.

Step forward in time 900 years, however, and the Sumerians and Akkadians of what is now modern-day Iraq and Iran were (probably) using cannabis to treat nocturnal convulsions. This was around 1800 BCE. The Ancient Egyptians and Indians were using cannabis for a wide range of ailments, with cannabis turning up in the Vedas, the great mythical epic poems of the Hindus.

In the 11th Century AD, cannabis had spread too much of the known world and was being used to treat epilepsy; al-Mayusi, an Arabic doctor, prescribed cannabis for the condition.

Westerners later brought medicinal hemp back to Britain during the 19th century, where it was quickly taken up as a treatment for, amongst other conditions, “infantile convulsions”.

Fast-forward a few years and cannabis had been made illegal. Any medicinal use of the drug was forbidden, and many thousands of children and adults were denied a chance to use an effective and tolerable anti-seizure medicine. Nobody knows how many people died as a result.

Dravet Syndrome and CBD

Dravet syndrome is a rare form of epilepsy (1 or 2 in every 500 children with epilepsy, who make up around 4 percent of the overall population). About 70 percent of people with epilepsy respond to treatment. People with Dravet syndrome do not respond to conventional treatment.

Usually beginning as febrile (fever-like) grand mal or localized shaking seizures that start at the age of around 3 to 12 months, Dravet syndrome progresses to severe muscle contractions and jerks (myoclonic seizures) between the ages of 1 and 5. Seizures can last more than two minutes and can be life-threatening and brain damaging.

One of the difficulties with Dravet syndrome is the wide variety of seizure types a child can develop. They are typically very sensitive to infection and fever, which can trigger fits.

As a child with Dravet syndrome grows, they usually have noticeable developmental delays. Most children have some degree of developmental disability.

There are genetic links with Dravet syndrome that indicate that it is malfunctioning sodium channels that cause the condition. Typically, a mix of a ketogenic diet and medications are needed to control Dravet syndrome. Unfortunately, most of the anti-epilepsy drugs available do not work or are intolerable. Most children find no relief.

CBD Oil for Dravet Syndrome

A drug called Epidiolex, just a trade name for CBD, was approved for use with Dravet syndrome in June 2018 for children over 2 years of age. This announcement followed years of research and battling against legislation that not only considered CBD to have no medical value, but even put people in prison for possessing it. Administering a cannabinoid product to a child would have been unthinkable 20 years ago; now it is accepted as the only solution available.

One of the major turning points in the battle to get CBD oil for Dravet Syndrome legalized was the case of a girl called Charlotte. She had as many as 50 convulsive seizures a day and when she was given a strain of cannabis that had a high CBD content and a low THC content called Charlotte’s Web, she only had 2 to 3 nocturnal convulsions a month. Each seizure damages the brain, so reducing the number of seizures is vital for normal development.

How CBD actually mediates its anti-seizure properties is not well understood. In fact, the mechanism is almost totally unknown. Brains are complicated things and CBD has many different targets in the brain, so it will be some time before the exact mechanism for CBD oil for Dravet syndrome is known.

Cannabidiol has shown remarkable effects in treating Dravet syndrome. Children who had at least 4 convulsive seizures in 4 weeks were given CBD or a placebo. 43 percent of the children who got CBD had a 50 percent or greater decrease in the frequency of their convulsive seizures. Three out of the 120 patients had a complete cessation of seizure during the trial. Side effects were more common than in most other trials, probably because of drug-drug interactions with clobazam and the other drugs the children continued to take during the trial.

Hard Evidence is not a Miracle

A miracle requires a supernatural being or entity to choose one good thing over one bad thing, according to the human being that is the recipient of the miracle. Like all superstitious beliefs, when you dig a little harder into them, there are reasonable explanations.

It is fantastic news that children are being freed from their epilepsy and given a chance to develop normally, but we should not call it a miracle. Scientists worked for years to attain these results. They tested the safety of CBD oil, raised money to do the large-scale trials, published and peer-reviewed the work. It builds on years of research into the endocannabinoid system and is a remarkable success for science over misguided prejudice in legislation.

Some children did not respond to CBD treatment. They missed out on the miracle, as will many around the world who do not have access to the drug. Science, not miracles, will help them.

Hopefully, the studies that are being carried out into other forms of epilepsy will yield fruit. CBD has a very good safety profile, few side effects, and is not psychoactive. It is tolerable, effective, and cheap. Increasing availability and less legislation will mean more research and hopefully more scientific breakthroughs.

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