Conference Coverage
Open communication is critical
Dr. Jeffrey Gold, a pediatric neurologist at Rady Children’s Hospital in San Diego, and his colleagues reported the case of a boy with Doose syndrome whose seizures resolved after initiation of cannabinoid therapy.
Dr. Jeffrey Gold
“We face somewhat different challenges in California, where recreational marijuana is not legal. Medical marijuana has some acceptance, but it exists in a nebulous legal area,” he noted in the press briefing.
The boy’s seizures were refractory to medical therapy and video EEG features suggested a high risk of progression. His parents opted to try CBD instead of the ketogenic diet, the standard of care in such cases.
“They obtained the product from the local family group, which is challenging for us because we don’t really know what’s in it. We don’t know what the composition is. The family doesn’t know what the composition of the product is,” Dr. Gold said. However, the boy’s mother obtained independent testing, which showed that it was sometimes high in CBD, other times high in THC.
After starting therapy, the boy had apparent worsening of seizures. Testing revealed that his valproic acid level had risen from 115 to 178 mcg/mL, suggesting the CBD was interfering with the drug’s clearance.
The valproic acid dose was lowered, and over a 4-month period, the patient became seizure free. “We obtained another EEG which was completely normal, honestly to our surprise,” reported Dr. Gold, who disclosed no relevant conflicts of interest. “And I don’t know why that was, if that was because he got some extra valproic acid and that tripped a mechanism that set off improvement, or if that’s because of the CBD. Resolution of seizures and normalization of the EEG has been reported before in Doose syndrome and can happen spontaneously or as a result of medication.
“We wanted to get this report out to the community so that they would know, if families choose to start CBD therapy, we strongly advocate that they share that information with their physicians and that physicians manage the other antiseizure treatments the child is receiving,” Dr. Gold said. “We have heard from parents and from other providers that once they told their provider that they were doing CBD, they were told to not come back to the office because they were doing a nonapproved therapy, and we don’t support that. We want families to feel like they can share their treatments with their physicians and receive the help they need because we don’t know what these medications do to other treatments that the patient might be receiving, and it’s imperative that families stay in contact with their physicians.”
Families often tinker with artisanal cannabis products themselves, hoping to find just the right combination, Dr. Gold noted. “It emphasizes both the difficulties of doing the artisanal preparations but more specifically, the difficulties of not doing it scientifically. Science is hard, it’s very difficult, it’s expensive, and it’s time consuming. But it’s the right way to do it. And studies ... that are coming up are the right way to do it,” he maintained.
“So we encourage families to pursue conventional treatment, enroll in clinical trials when they are offered, to get involved with the scientific community as you can, and we will get an answer to these questions. But it is going to take time. We need to do it the right way,” he concluded.
