Medical Cannabis or CBD as Treatment for Seizures

Hi Collen, thanks for linking the prior exchanges with my post. Yes, we've used the Epidiolex CBD oil (FDA approved in 2018) since January '20. Started with 1ML 2X/day, and based on his body weight (143lbs), doctor recommended we gradually increase up to 3ML, 2X/day. The doctor's thoughts were to reduce/remove the zonisamide med altogether by reducing the dosage down as we increased the oil. When we removed the 50mg of the 100mg dosage of zonisamide, ~4-days later he experienced two grand mal seizures in the afternoon of the same day (we returned back to 100mg dosage). We found that at 3ML-2X/day dosage he experienced diarrhea and drooling episodes, recognized side-effects, so we adjusted to 2ML in A.M. and 3ML in P.M., and have been at that dosage since early April '20. Maybe my expectations were that the oil would have a more dramatic response like arresting the myoclonic jerks/quick-bursts and possibly eliminate/control grand mal events. In addition, possibly allow removal of one, if not both AED's.

Dear All,

Recently, I have received an invitation to participate in a study on medical cannabis. It is open to all, those who use or not medical cannabis for treatment of epilepsy, anxiety, etc.

Here is the link for those interested:
https://realmofcaring.org/long-term-cbd-study/?utm_source=Klaviyo&utm_medium=campaign&utm_campaign=Research%20participation%20invitation&_kx=H3K9DbGE9TaKje5yDZ-9GGqP6RkuOLj-4fbh0LQi2w2-oQRCN37hY4-B8Y5VZ_GT.UvV543
And a short description of this study:
"RoC was recently selected to collaborate with Johns Hopkins University (JHU) on a NIH/NIDA (National Institutes of Health/National Institute on Drug Abuse) opportunity to support continued research on medicinal cannabis policy, condition, and outcomes! This monumental alignment supports research to understand the potential benefits, harms, and outcomes of medicinal cannabis use in the United States.

Let's help in finding alternative treatments for epilepsy!

Chris (@santosha)