CLEVELAND — A finger wag and a stern look is all Paige Frate is able to communicate to a dog that just won't stop licking everything in sight. She also needs an iPad to communicate because she's not able to talk after years of seizures related to her Dravet Syndrome.
Food and Drug Administration (FDA)-approved treatments
Paige has been on Epidiolex for two and a half months trying to reduce the number of seizures she has everyday. It's the first FDA-approved drug that has purified marijuana in it. Approving Epidiolex was a big step for the FDA, and it's cut Paiges' seizures down dramatically while helping her sleep a little bit more.
Paige uses this iPad to communicate after becoming non-verbal after years of seizures associated with her Dravet Syndrome. Paige's mom says Epidiolex reduced roughly 200 small seizures a day down to 50.
"When she first started taking the medicine, we actually saw some progress in that area [sleeping]," said Paige's mother Kristina. "That's high on my list of things I'm trying to accomplish."
A few cities away, Lola Kibler is improving in a similar way after taking Epidiolex too.
"Her brain doesn't short-circuit, which is pretty much what a seizure is," said Lola's father, Khristian.
The only difference between the two girls is which one would be able to take Epidiolex at school.
Lola sits with her grandfather while her sister plays a game on the chair.
Lola's family says they haven't encountered any issues regarding Epidiolex so far, but Paige is in the Riverside Local School District.
Kristina says Paige takes Epidiolex before and after school, but if her needs change, Paige might need to take it during the day. Kristina says so far, she's been told that won't be allowed.
"Even though Epidiolex is approved through the FDA, there are still issues with the school system allowing it to be administered during school hours or even on their property for that matter," said Kristina.
Paige's parents lay out a long line of syringes with various medications to treat Paige's Dravet Syndrome.
School Psychologist Dr. Erich Merkle says most districts treat FDA-approved drugs the same way they would other powerful medications that they give students all the time. He says some schools might not even know Epidiolex has parts of marijuana plants in it.
"That would be regarded by most school districts consistent with their dispensing and medical practices," said Dr. Merkle.
But he says in districts that are pushing back against drugs like Epidiolex, the FDA-approved drug might be getting mixed up in the greater conversation about the type of medical marijuana sold in dispensaries. So far, those products are still illegal under federal law and are not allowed in any school.
Kristina says they're waiting to see how Epidiolex works for Paige, but that medical marijuana products through the Ohio Medical Marijuana Control Program could be a possibility in the future.
"Medical marijuana really is a different adaptation of recreational marijuana and medical marijuana is still considered a Schedule 1 component," said Dr. Merkle.
Meanwhile, Epidiolex is legal and prescribed by a doctor.
"It's sad but I want to say that we're used to it in a sense just because of the battles that we've had just in general," said Kristina.
Medical marijuana treatments
Eventually, children like Lola and Paige might find relief from Dravet Syndrome through medical marijuana products.
"Medicines don't always help prevent the seizures, so she does qualify to get a [Marijuana Patient Registry] card," said Kristina, talking about Paige.
That card would allow Kristina to get medical marijuana for her daughter to treat the seizures. She says Epidiolex is their main approach but medical marijuana is "Plan B."
Families in similar circumstances will quickly hit a roadblock at many, if not all, schools.
All the districts News 5 reached out to say they either don't have a policy for medical marijuana or that it would violate their Drug-Free School Zone and Workplace policies.
"Right now, I suspect the lack of guidance is the fact that there is still that tremendous disconnect between the federal government and the state governments," said Dr. Merkle.
NEOLA helps school districts write their district policies and so far, NEOLA hasn't offered any policies regarding medical marijuana. Dr. Merkle says a policy allowing it would instantly pit schools against federal law and state law.
"The radio silence, as you called it, in Ohio is partially due to the fact that our medical marijuana laws don't have any guidance for schools," said Dr. Merkle.
Dr. Merkle says the first steps should be taken by the federal government, clarifying their position on medical marijuana. That would allow state governments to better direct schools how they should handle students seeking treatment.
Read the full statement from Riverside Local School District below:
Riverside Local School District partners with NEOLA to develop board policies for our District. NEOLA has not yet created any policies in regards to handling medical marijuana on school grounds. Therefore, Riverside has sought advice from our legal counsel on how to handle medical marijuana products recommended to students by properly certified physicians. Due to unsettled issues surrounding Ohio's medical marijuana program and the conflict with federal law, it is best to avoid administering medical marijuana on school premises. Even if the recommendation for medical marijuana is properly obtained from a registered doctor and dispensary, Ohio medical marijuana laws do not allow a school nurse or other employee to administer it. And even if Ohio allows for the administration of medical marijuana and cannabis derivatives to some extent, doing so is still illegal under federal law, regardless of need or the reason for using it. The District must still comply with federal drug-free school policies. The District has worked - and will continue to work - with any students and their parents who may be recommended medical marijuana or prescribed medication that contains marijuana derivatives to best meet their individual needs. At this point in time, we currently do not have any students that require an FDA approved marijuana-based prescription dosage during school hours. If and when a student in our District requires a dosage of an FDA-approved prescription that contains marijuana derivatives during school hours we would make sure to act in accordance with state and federal guidelines. Lastly, the District cannot discuss an individual student's health records and/or their prescriptions as that is private and sensitive information.