Recent interest in cannabidiol as an anticonvulsant has many families asking if cannabidiol might be valuable in treating seizures in MECP2 duplication syndrome. There is no easy answer to this question, but here is what we can say for sure:
Individuals with MECP2 duplication syndrome are prone to seizures. Most, if not all, will eventually develop seizure disorders sooner or later.
These individuals typically have frequent seizures and multiple types of seizures that include atonic and myoclonic types, but also a variety of others.
The seizures tend to be treatment-resistant and no single anticonvulsant has been identified as being particularly useful with these individuals as a group.
Vagus Nerve Stimulators, Ketogenic Diets and other approaches have been tried with varying degrees of success in specific cases but no clear pattern of success in the group as a whole.
So, basically there has been no treatment modality that has been very successful.
We might apply the often quoted Sherlock Holmes line here in a slightly different way:
Once you eliminate the impossible, whatever remains, no matter how improbable, must be the truth. – Arthur Conan Doyle
Once we know that none of the usual probabilities work to manage these seizures, we need to consider some less probable solutions. However, in considering the improbable, we always need to start with the least improbable. In this case, successful treatment with cannabiol remains improbable, but it may be the most probable of improbabilities.
Here are the pros and cons.
PRO: While the recent attention to the success in treating Dravet syndrome brought a lot of attention to this through its coverage by Dr. Sanjay Gupta on CNN, many scholarly studies have been published on the anticonvulsant properties of cannabidiol for more than the last 40 years.
PRO: There has been some success demonstrated treating seizures in Dravet syndrome, and while it is clearly a different condition than MECP2 duplication syndrome, there are some features of the seizures that are similar. They both produce multiple types of seizures including myclonus, they are both treatment resistant.
CON: While the apparent success in Dravet syndrome is impressive, there is still a lot more to be learned about whether the effects last, side effects, interactions with other medications, etc.
CON: There is probably not a lot of economic incentive for drug companies to research this. Since it is a naturally occurring substance, it would be hard to patent + it has the additional complication of the prohibition of cannabis.
ALL THINGS CONSIDERED
While it is very far from a sure thing that it will prove helpful. Cannabidiol treatment of seizures in MECP2 Duplication Syndrome should definitely be investigated. In the absence of better alternatives, this may be the most probable improbability available and it is worth a shot.
CAUTION: While it is important that the use of Cannabidiol be explored, it is also important that it is explored carefully. Uncontrolled experimentation has two dangers: (1) It could actually do harm, and (2) it may appear to be ineffective simply because we are doing it wrong (for example, if we don’t have clear ideas of the dose of the active ingredients or don’t know what else is being administered with it, the effects may be very different).
We need thoughtful, well controlled research and clinical trials to see if this can be a useful treatment.