Medical marijuana offers alternative remedy

Shannon LeClair
Times Reporter

 

When one thinks of marijuana use it invokes the image of a stoner sitting in a haze of smoke, watching TV, usually with munchies nearby. Which is exactly the vision that came to mind when the Lockie family, from Langdon, thought about marijuana and its users.
It’s also part of why it took some time for them to put that image away and begin to seriously consider using medical marijuana to help their son Braxton, who has suffered from 20-50 seizures a day for much of his young life.
The Lockies, after plenty of research and discussions with families using the treatment for their children, decided to give medical marijuana a try.
“If you were to tell me a couple years ago that we would be in this process, I wouldn’t believe you because we are definitely not at all familiar with marijuana,” said Tara Lockie, Braxton’s mom.
“People mentioned it to me, and I was very dismissive of it, I didn’t think it was something for our family.”
There is a bad connotation of medical marijuana users, said Lockie, that it’s people using the system and just using it to get high, which didn’t fall in line with her one-year-old son.
“I think enough people mentioned it to me and hinted to me and told me in different ways, from all walks of life … that I just said ‘okay we have to explore this,'” said Lockie.
It began with a three-month trial, which is the same time frame the family has used for any medications their son has taken. They started with an extremely low dose, one Lockie said probably didn’t even register in his body, and over time increased it to a dosage appropriate for Braxton’s body weight.
“Once we got to that place where he was at a good dosage, we didn’t see any negative side effects and his seizures seemed to be not any worse, so we thought we would continue on,” said Lockie.
Braxton did well for most of the summer and the fall, he was eating with his mouth, swimming in the pool and had begun saying some words.
One day, in October, Braxton suddenly was having non-stop seizures, known as status epilepticus, which is defined as an epileptic seizure longer than 30 minutes, or more than one within a 30-minute period. When this happens the Lockies have to give Braxton midazolam, which is basically their rescue drug to help stop the seizures. The drug, which is a strong sedative, has side effects that include Braxton going into a zombie-like state, becoming non-responsive, needing oxygen and usually a transport to the hospital.
This time the family tried giving Braxton an extra quarter dose of his medical marijuana.
“So many of the medications Braxton has been on. We have tried 10 different AEDs, they cause extreme drowsiness, fussiness, they can cause teething problems, vision loss, sleeplessness, a whole bunch of other problems that make day-to-day life hard even if the seizures are controlled,” said Lockie.
Braxton has tried 10 different AEDs to help control his seizures and of those 10, only one has ever improved them.
“The medical marijuana seems to control his seizures, to about the same extent and a little bit greater than that one medication that works for him, but it doesn’t make him drowsy, it doesn’t affect his teething. It’s a very low dose of THC,” said Lockie.
There are numerous documentaries coming out from families who have used medical marijuana with their children and how it has helped them in ways that many of the other medications hadn’t.
Many documentaries talk about cannabidiol (CBD) which is an active cannabinoid identified in cannabis. It does not have the same properties that make you high like THC.
While groundbreaking studies have been coming out of Israel, including one on CBD and its therapeutic properties (http://www.projectcbd.org/news/whole-plant-cbd-rich-cannabis-better-medicine-than-single-molecule-cbd/) studies have just begun in North America. There’s currently not a lot of research, which is why Lockie thinks many doctors are hesitant to give it to children, especially because there isn’t background about how much is the right amount and possible long-term side effects.
Most reported cases of children suffering from the same conditions as Braxton have a short life expectancy, so time was of the essence for the family.
“Considering we don’t have a long-term we were willing to try,” said Lockie.
Braxton is given one gram per day, which is made into an oil product that is divided into his six feeds he receives through a G-tube each day. It has been a challenge to find the proper dosage and a safe way to administer the marijuana, due to the limited information available from doctors, producers and the government at this time. The family has been slowly taking Braxton off of his pharmaceutical medications.
“He is on a ketogenic diet, takes therapeutic doses of vitamin B6, and has monthly IVIG treatments, which are all attempts to control his seizures. We also have two rescue medications, which are sedatives, which we use to drug Braxton when he seizes for too long, or too often, and we need to give his brain a break before further damage is done,” said Lockie.
“So far we have only seen improvements by increasing marijuana and weaning pharmas.”
One of the last times Braxton was in the hospital, the staff advised the family to max out on the medication Sabril to help him. This resulted in the closest they had come to losing their son. Weaning him off the medication, lots of prayers, and increasing the marijuana is what brought him back, said Lockie.
“Epilepsy is evil, it changes forms of seizures, effects different parts of the brain, displays differently in each person. Just when you get a bit of a handle, a fever, a virus, a new environment, could bring on seizures,” said Lockie.
The only AED Braxton is currently on is Phenobarbital, but the family is considering weaning him off of all pharmaceuticals in the near future.
An Airdrie family, friends with the Lockies, also use medical marijuana for their child. Mia Wilkinson was originally diagnosed with Ohtahara syndrome. In July 2013 Mia was in a medically induced coma due to status seizures. She would have approximately 50 to 100 seizures a day, and every six to eight weeks would end up in status.
“We had decided that when it became obvious to us that we were keeping her here for us and not for her that we would let her go,” said Sarah Wilkinson, Mia’s mom.
“Her neurologist had come up to us and said, ‘you know sometimes there’s just nothing left for us to do’ were his exact words, and I can just remember the way the room smelled, the look on his face, everything about that exact moment.”
After talking with her husband, the family decided to take Mia off of her ventilator and basically take her home to die. At that point Wilkinson had been researching cannabis for about a year. She called Mia’s neurologist’s nurse crying and asking if he would consider writing a prescription for medical marijuana.
“No I don’t think it will work, but I would never be able to forgive myself if I let her go without trying,” Wilkinson recalls telling the nurse.
The doctor signed off on the prescription. Wilkinson remembers being happy they were given the okay, but at the same time she was unsure because it was so new. There wasn’t a lot of information available at the time, but Wilkinson contacted some moms in the U.S. going through the same thing and began figuring out where to start.
She was able to obtain a high THC strain. A year and a half ago getting a high CBD strain was next to impossible. According to Health Canada the only approved products must come in dried form.
“She was eight-years-old, couldn’t smoke it so what are we supposed to do. So I did make it into a coconut oil infusion and basically it was just trial and error,” said Wilkinson.
The family saw results almost immediately; within 24 hours all of Mia’s seizures had stopped.
The Wilkinsons were a little leery about it, and kept waiting for the other shoe to drop. Mia had long-term monitoring done in hospital, and the neurologist said it was by far the best EEG she had ever had. The family questioned if the results were from the cannabis and were told the only way to tell that would be if Mia was slowly taken off of her other medications.
They began weaning her off the drugs in September 2013 and by April 2014 she only had seven seizures and was only using cannabis. Feb. 17, 2015 marked one-year seizure free for Mia, who is now saying some words, self-feeding and drinking juice out of a cup.
“It has just been absolutely amazing,” said Wilkinson.
“She is now not on any drugs except cannabis and her health has never been better and her medical records support that. I don’t know what to expect at this point, I understand her syndrome is progressive, it is degenerative, it is terminal, but now no one can tell me that.”
She has asked doctors if they are still looking at the same medical conditions for Mia, is she still terminal, and no one is able to tell her yes or no.
Both Wilkinson and Lockie plan to advocate for cannabis use as a consideration for children. Wilkinson said she is angry and frustrated by the system because she has seen first-hand for her family, and others, how it has made a difference.
“I know how many lives this could save, it won’t save every child but it will save a lot and if it saves one parent from having to bury another child…,” said Wilkinson, getting emotional.
“By sharing our experience we hope to reduce the stigma that surrounds medical marijuana and inspire other families who are considering marijuana when typical drugs aren’t helping their child’s epilepsy,” said Lockie.
“I’m far from an expert, but I feel that parents need to share what we can to support each other, especially on a convoluted topic like marijuana use.”