If you have the opportunity to use cannabis alone, please consider. It works much better solo than fighting against synthetic chemicals in the body. It took nearly 2 and a half years to wean the pharmaceuticals and see what cannabis could really do for our daughter. If I could start over, I would certainly start the process with cannabis. Of course, if we had taken a different route we would not be where we are today with our understanding of our kid's epilepsy.
Ruby had failed 5 drugs including Depakote, Keppra, Onfi, Zonagran, and Epidiolex before I decided it was enough. Of course there were plenty of other drugs on the list and the team was eagerly looking forward to trying them all. Which I appreciate in one sense. I know they truly believe in their medicine, just as I believe in mine. But after finding in her genetics report a mutation in her p450 cytochrome system and linking it to her failed medications, I realized I was right in reporting the pharmaceuticals were making her seizures worse.
It made me realize that no one knows how a body will metabolize a chemical, natural or synthetic. And it also made me speculate how many other "intractable" epileptics had genetic or sensitive metabolic roots to medications not working, where no one even thinks to look. And by removing the very drugs that are reported to work would help so many in similar circumstances.
And how many are having adverse reactions from interactions from 2 or more drugs together? Although the interactions are identified and categorized according to ONE cytochrome most heavily involved in its metabolism, this is usually (at most) 24% of the process. What other cytochromes or other metabolic processes are used and acting under the radar?
So I learned two lessons.
CBD is also metabolized by the p450 system and using too much (with the Epidiolex trial we STARTED with too much) also creates a negative reaction. Even cannabis (and other natural chemicals) must be used with caution.
Most drug data sheets state a mechanism of action that is THOUGHT to be how it works in the body. But nearly every one says, they still don't know how it works. Talk about experimentation. Example Keppra Datasheet
I would much rather experiment with earth-made chemicals than people-made chemicals. Especially since the almost all people-made chemicals are imitations of earth-made chemicals. Find what makes sense-for you.