Baby Ellanor Blanchett of Texas and her family traveled to Oregon this year to try a new medical marijuana treatment developed in Eugene. The parents were hopeful it could alleviate their daughter’s daily seizures.
But with federal restrictions on marijuana and research of the plant, there are no guidelines on the efficacy or safety of giving pot to a child. An Oregon pediatric neurologist is currently investigating these questions.
In part two of our series on medical cannabis in Oregon, KLCC'S Angela Kellner finds out what happens when Ellanor is given marijuana extract.
When Sabrina and Chris Blanchett came to Eugene it was for a 30-day cannabis trial with MX Biotech for their baby. First they had to get legal permission to give Ellanor pot. With letters from Ellanor’s Texas doctors, they got a card from the Oregon Medical Marijuana Program.
There are currently 223 minors with medical cards in Oregon. And Ellanor is one of the 19 adolescent cardholders from out of state.
The parents went through an intensive 3-day marijuana education course with the head of MX Biotech.
Sabrina: "Like non-stop, almost all day long. He gave us a few breaks. It was very overwhelming and we had lots of questions."
Before we can find out what happens when Ellanor starts taking the cannabis extract, we too need a quick science lesson.
Everyone has an endocannabinoid system that has receptors throughout the body. Cannabinoids are chemical compounds produced by the body that act on these receptors. Phytocannabinoids are found in the marijuana plant.
The takeaway is this: the body has a built in system that can be receptive to certain compounds or cannabinoids from the marijuana plant.
Troy Morris: "Ultimately what we're doing is we're just facilitating the endocannabinoid control system and allowing it to function with the resources that it needs."
That’s Troy Morris, an organic chemist and Founder of MX BioTech.
Morris: "We're just identifying what cannabinoid profile that comes from a grower who has developed a solution using a genetical plant and then applying that to where it works best."
Morris says MX Biotech is matching the patient’s system to a specific strain of a cannabinoid isolated from a pot plant. He calls these profiles. He and his team have worked with more than 4,000 patients.
Morris: "It is a night and day difference. When our program is effective then a physician would be able to document the lack of seizures without being high. And the dosing that it takes might be one-hundred-thousandth or one-millionth of what a recreational person might think of like when they take a pull off of a joint."
Morris says smoking or eating large amounts of pot can overwhelm the body’s cannabinoid system. What MX Biotech has developed is micro-dosing, giving extremely small amounts of extracted cannabis at regular intervals.
It was that micro amount of cannabis extract that appealed to Sabrina and Chris Blanchett. They believed there was very little risk in giving their daughter these tiny doses.
Chris and Sabrina started giving Ellanor the profiles when she was 15-month-old. The first one made her sleepy. The next one kept her awake, so they diluted it. Within minutes of taking it Ellanor had what Sabrina calls super baby strength.
Sabrina: "I say that because she started rolling over, which she's never done before. Her overall core strength and head control had improved. She started moving her left arm, which she's never done before, using her right hand to grab her left hand."
While the parents were excited to see these changes in their baby, it wasn’t the end result they came for. So they moved down the line to the next profiles, in alphabetical order.
Sabrina: "And we tried C and it didn't really do anything. And we tried D and D was bad, overall, just bad. It caused more seizures and she had like a convulsive seizure within a cluster of spasms. We probably gave her like two doses of D and then I was like, we're done. We're done with D. This is bad. We can't do D."
After taking a few days off, they gave her Profile E.
Sabrina: "Immediately I noticed oh she's not having any spasms. Not having spasms at all during the day. The only time she's having them is first thing in the morning when she has her first bottle and she would have like 3 very spread apart single body jerks. Which was huge, because that's never happened before."
The parents wondered if there was something in the MX Biotech database that could give Ellanor the body strength from the second profile and the seizure control from the fifth one. But their month in Oregon was up and it was time to fly back to Texas. When they got home, they continued to see progress in Ellanor.
Troy Morris says he’s seen results like this many times with the people he’s worked with.
Morris: "It's a life-changing event when you stand in front of someone who's seizing 15 times an hour and then when the match is made, they don't do that anymore."
He’s passionate about wanting to scale up his project, to replicate the medicines and protocols so more people can benefit. And he’d like to see it happen here in Oregon.
Morris: "The intellectual property and the application really opens the door for insurance companies, for medical companies, for OHSU. What MX Biotech is trying to do is create the hub of research here in Oregon because it's worth far more to Oregon than selling weed ever is."
But the federal government classifies marijuana as a Schedule One narcotic, saying it has no medicinal value. It’s this restriction says Pediatric Neurologist Colin Roberts that has left health care providers like him with no way of knowing whether marijuana is safe or effective for their patients.
Dr. Roberts: "It's been difficult, I think, for many of us who treat seizures who are anxious of course to find better treatments to know how to advise people. We don't come to the table with the scientific data in the way that we would like to do so. "
Dr. Roberts directs the Pediatric Epilepsy Center at Doernbecher Children’s Hospital at Oregon Health and Science University in Portland. Like many hospitals, OHSU has a policy forbidding its doctors from recommending medical marijuana to patients.
But the doctors can study it, if they can jump through the legal hoops and get permission from a host of federal agencies, including the DEA. That’s exactly what Dr. Roberts just did. He's partnering with 8 other centers across the country to see if cannabidiol can help in childhood seizures.
Dr. Roberts: "Does something like cannabidiol actually work against seizures? Is it safe to use? And how much is needed to treat seizures? And to find that out in a way that gives us evidence so that we can move forward."
In late April, when Ellanor was 19-months old, she and her mom Sabrina returned to Oregon for another week of testing MX Biotech profiles. Sabrina still believes the micro-dose profiles from MX Biotech are the best match for Ellanor. Remember they wanted to find one that gave her strength and controlled her seizures. As Sabrina’s talking about it:
Sabrina: "So, um…that was one right there. Did you see it?"
Ellanor has a small, brief seizure. Sabrina and I have been talking for a while now, and its past time for Ellanor’s next dose.
I watch as Sabrina takes a small vial out of the refrigerator in her Portland hotel room, and dilutes it with organic coconut oil. She rolls it around in her hands to warm it up, measures a tiny amount into a plastic syringe. Baby Ellanor is lying on the couch; she can’t sit up by herself.
Then Sabrina shows me the plastic bowl filled with about 10 vials of different profiles made just for Ellanor. She can’t take them back to Texas; they’ll go in a deep freezer at MX Biotech until she returns. She's left wondering if one of those vials is the perfect match for her daughter.
Sabrina talking to Ellanor: "So we're not going to give up are we? You're going to walk one day, aren't you?"
Update: June 29th - Sabrina says she’s planning to bring Ellanor back to Oregon in August to try more of the MX Biotech profiles. Ellanor has stopped taking one of the anti-seizure drugs. She did go in for a 24-hour EEG and only had two seizures the entire time.