trying epidiolex

Sunday morning, after a second restless night filled with what I believe were focal seizures, we gave Calvin his first dose of Epidiolex, a plant-based pharmaceutical version of the popular cannabis constituent, cannabidiol, aka CBD. We've had the bottle containing a minuscule amount of the drug, which is in oil form, for about a month, waiting for the moment when I felt right about giving it to Calvin.

I began reading about Epidiolex nearly five years ago when its clinical trials began. Because of social media and the network of parents—mostly mothers—of children afflicted with epilepsy, I knew about the drug trial before Calvin's neurologist did. There was an ongoing trial at Massachusetts General Hospital, but Calvin wasn't having enough seizures to qualify and participate.

Shortly after the drug was approved in June of 2018, I began following a Facebook Epidiolex group. My sense is that, not unlike other CBD oils, many patients seem to do better on lower doses of the drug and have fewer dose-related side effects such as diarrhea, agitation, insomnia and loss of appetite. I've also seen documentation showing that some doctors are having success starting their patients on a fraction of the recommended starting dose of five milligrams per kilogram of the patient's weight. On the whole, however, it's a mixed bag; some children have become seizure free on Epidiolex while others have seen their seizures exacerbated, albeit on higher doses of the drug, which is not unlike other pharmaceuticals.

Calvin's first experience with medical cannabis was in early 2014. I had been researching its use in treating seizures for about a year, after a lifetime total of ten antiepileptic drugs had failed him. The learning curve was steep; I knew of only two other parents treating their children's seizures with the herb. Both were using CBD. Paige Figi, whose daughter Charlotte died recently, was one of them. At the time, Maine did not have any high-CBD cannabis strains with which to make an oil. Connections on Facebook led me to a guy in Sacramento named Dave who was making a cannabis oil using one of its other non-psychoactive constituents, THCA (tetrahydrocannabinolic acid.) Blindly, I set out in search of a strain that might help reduce Calvin's seizures while not making him too wired or too sedated like the pharmaceuticals had done. I spoke with several local dispensaries and individual caregiver growers. I met some of them in my home. Eventually, I decided that a high-THCA hybrid—part indica (sedating) and part sativa (stimulating)—might be best. I was able to procure some flower from a local dispensary, and Dave from Sacramento held my hand through the process of making a THCA oil using his recipe, which employs a cold process meant to avoid altering the non-psychoactive THCA into psychoactive THC.

Prior to giving Calvin my homemade THCA oil in February of 2014, he had been having grand mals every week or two during the day, usually when he was in the bath. After reaching a therapeutic dose of the oil, Calvin had no daytime grand mals for five-hundred days. Since then, he has had only a handful or two of grand mals during the day, greatly reducing my anxiety and his risk of getting hurt. Calvin also began sleeping better and his behavior improved.

During Calvin's first four years on THCA we were also weaning him from the benzodiazepine, Onfi. As we slowly lowered the benzodiazepine, Calvin's seizures, not surprisingly, increased. Sometimes he had more than a dozen per month, including focal ones. We tried a homemade CBD oil followed by a branded one, but they only seemed to exacerbate his focal seizures. Finally, in June of 2018, we started him on Palmetto Harmony CBD, which uses a different extraction method than the other ones we had tried. On a daily dose of about 25 milligrams, Calvin went forty days without a grand mal. After the breakthrough seizure, however, we struggled to regain that same kind of seizure control, eventually increasing the Palmetto Harmony to 145 milligrams in that effort. Sadly, Calvin's focal seizures also increased. When we cut the dose in half he did far better, but was still having too many seizures. So, in anticipation of trying Epidiolex, we gave Calvin his last dose of Palmetto Harmony in February of this year.

Since then, we have had some luck managing Calvin's seizures with higher doses of my homemade THCA oil; he has had only two or three grand mals in each of these last couple of months. But a recent flare-up of focal seizures, which had virtually disappeared back in late November, compelled me to finally start Calvin on the Epidiolex.

Having observed over years that smaller doses of CBD seem to work better for Calvin and other children, I was able to get his neurologist's buy-in (not that I needed it) to start Calvin on a fraction of Epidiolex's recommended starting dose of five milligrams per kilogram. Instead, Calvin started on just over half a milligram per kilogram of his weight, for a total of twenty milligrams per day instead of 174 milligrams per day. Having seen firsthand how well Calvin did on Palmetto Harmony CBD at a similar dose gives me hope.

So far so good. Calvin has been in a decent mood and his sleep patterns have not really changed, but it is only day three, so cross your fingers and knock on wood.

Calvin coming out of a seizure, August 2014

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