Friday night at our beautiful support meeting, I finally got to meet my friend Ady. We’ve gotten to know each other over the phone so it was good to finally lock knowing eyes. I’ve already introduced her to you too, but as Valerie. Last May I posted about her daughter’s case conference with the doctors over at Rady’s Kidstart that I participated in. The offensive one where they told her they were calling CPS. We can call Ady by her real name now because of course there wasn’t any CPS follow up.
I was beyond disturbed and confused after that conference and needed to process. Am I so liberal I’m blind to some risk, or are those doctors really that offensive and obtuse? I reached out to Dr. Elisa Sobo, an anthropologist at SDSU, in hopes she would get it. I mean seriously, what was really going on in that case conference? Certainly nothing helpful, supportive or healing.
Dr. Sobo heard me. Which felt even more reassuring after feeling so misrepresented at The Senate Caucus on International Narcotics Control. The Caucus concluded seemingly where it started – that we duh need more research. Which is primarily coming from GW Pharmaceutical on their high CBD medication, Epidiolex. I only personally know 3 families in an Epidiolex trial.
Yet I talk to mothers every week who are customizing their children’s treatment plans in creative and effective ways using all kinds of cannabis products. The aha! moments are often and real – these moms are genius. I’ll include myself here, WE are the healers. And who is capturing our wisdom? It’s crazy to me how few care how we do it (including our own neurologist and pediatrician who I would actually categorize as “supportive.”) So I was grateful that Dr. Sobo took interest.
Because here’s the thing: Epidiolex isn’t going to be affordable for years. Further, the research on Epidiolex does not translate to the whole-plant extracted, high CBD concentrates that families are already using. Meanwhile our products are already high quality, widely available, somewhat affordable, and being used through out the entire United States. So who is this research for? Not the families using high CBD.
We deserve support and that is the aim of study that took shape as I got to know Dr. Sobo. If you are the parent* of a child with intractable epilepsy either researching, currently using or having discontinued the use of cannabis and are willing to share your story, please consider joining this IRB approved study:
* Interviews held in San Diego County. For more information, please contact Dr. Sobo directly at firstname.lastname@example.org or by calling 619-594-6591. Please feel free to share.