In a recent move by the FDA, which is being celebrated by many in the medical cannabis community, prescription Epidiolex was approved a few weeks ago. It is an oral solution of pure plant-derived Cannabidiol (CBD) that contains a trace amount of THC. Its usage is intended to treat rare and severe forms of epilepsy. The FDA was careful to issue a statement that they were not condoning an approval of cannabis, in general. It is simply approving a liquid drug which treats Lennox-Gastaut and Dravet syndromes. Although this will undoubtedly help many children, there are side effects associated with Epidiolex usage, which include the following:
- decreased appetite
- transaminase elevations, elevated liver enzymes which may lead to liver damage/disease
The legalization of Epidiolex received high praise from The Epilepsy Foundation. Not everyone is as enthusiastic about it due to the side effects. Jim and Maureen Surin, parents of Ashley Surin, the young girl in Ashley’s Law, have misgivings about Epidiolex. Ashley’s Law was passed by the Illinois House and Senate and is still awaiting Governor Rauner’s signature. This would allow Illinois public school students to be allowed access to their medication during school hours. Here is a link to a previous article I wrote about Ashley Surin.
How effective is Epidiolex in controlling epileptic seizures? We have the Australians to thank for legalizing Epidiolex usage. There is now anecdotal and scientific evidence about the efficacy of using CBD only to control seizures. A study, which started 2 years ago at the University of Lambert Initiative for Cannabinoid Therapeutics, confirms that the addition of THC/THCA to CBD is much more effective in controlling seizures than CBD by itself. Australian parents had been forced to buy black market extracts of high THC/THCA to low CBD extracts for several years prior to the legalization of medical cannabis in 2016. Because THCA is non-psychotropic, they were able to give their children higher dosages without causing any intoxicating effects. Over half the participants using the extracts experienced a 75-100% seizure reduction. There was also a 35% improvement in cognition and a 25% improvement in language skills. Lead researcher, Ms. Anastasia Suraev, reported that 75% of parents considered the THC/THCA extracts effective and just under 50% of families in the study were able to reduce their antiepileptic medication.
Even more striking was the experiences of Australian families who originally used only black market, high THC/THCA to low CBD extracts, but then switched to Epidiolex when it became legal there. Many of them have reported that the original treatments were more effective in controlling seizures than solely with Epidiolex.
I thought I would also share some anecdotal information based on the experiences of a friend with epilepsy who is in the IL MCPP. She has had epilepsy since she was a child and is now in her 50s. She has successfully weaned herself off of all prescription medications over the course of 3 years. She had never used cannabis prior to enrolling in the program in November, 2015, when it started. She has painstakingly used much trial and error to get to what she considers to be a sustainable and reliable course of treatment to control her seizures.
Here are her recommendations:
Please note that what works for one patient may not work for anyone else, so this is only a guideline:
- Only use medical grade full spectrum cannabis extracts, not those made from hemp plants
- Use Co2 extracted, whole plant cannabis oil that is high CBD/low THC in a ratio of approx 4:1
- Add smaller quantities of CBN and CBC
- Divide the entire day’s dosage into 4 capsules and take 1 every 4-6 hours
- Delivery method is a high quality medical grade vaporizer
Click on a tag or post below to read more on this topic
And not forget to sign up for our Newsletter