Shawna's Story

I got out of bed at about 6 am to let the dog out. A few minutes after I crawled back into bed, as I  was just dozing off, Seadon had his first tonic-clonic seizure. At first, all I heard was his strained breathing, almost like rapid hiccups, then I noticed every muscle in his body seizing so hard that it almost seemed rigid. I had taken all my lifeguarding courses as a kid, so I knew that seizures were not usually harmful unless they lasted more than 5 minutes. So I waited, in that state of altered time where minutes turn into hours. When 5 minutes struck, I woke my 5-year-old daughter Kaelyn, who had been sleeping peacefully next to her brother, and calmly told her to go call 911, lock the dog in the bathroom and run next-door to get her Nanny and her Bubba, which she did with the presence and composure of a veteran EMT.  

The ambulance arrived 20 minutes later. Seadon had just stopped seizing. I had to resuscitate him 3 times.

No one in the ambulance would look at me, the whole 20-minute drive. No one in the emergency department would either. He won’t wake up. He’d been out for too long. He would have severe brain damage. He had to wake up! And so my poor Little Man did, when the distraught nurse broke the needle she was taking blood within his arm.  

Bloodshot light blue eyes opened to a threadlike fountain of blood streaming out of the broken needle left in his arm and a quivering bottom lip pressed out. “Are you ok?” I asked. He nodded and I knew he was. But the nurse demanded he speak. He was shy. He was discombobulated. He couldn’t. “He probably has brain damage. He has to try to speak so we can see if he still can.” 

“Fuck off, he’s fine. Ahem. I mean, thank you but can you please, get me someone who knows what they’re doing? He just had a grand mal seizure that lasted over 20 minutes. He stopped breathing 3 times. He’s exhausted. His body needs to rest and repair itself. You just woke him up by breaking a needle in his arm. He can’t speak because he’s upset and doesn’t know what’s going on. Can you speak, Bud?” Seadon nods his head bravely, tears streaming down his cheeks, without making a sound. “He’s fine.”  

Miraculously, he was.  

Several tests and 3 days later he’s taking his first Frisium/Clobazam with an Epilepsy Diagnosis. Weeks go by and we are continually increasing meds. I am not a fan of pharmaceuticals but we just don’t know what else to do. At age 7, Seadon’s seizures were much less frequent, way less severe, and most important; no longer life-threatening. However, they were still there. 

“He was always such a calm kid, do you think it’s the meds that are making him hyperactive?”  “Why can’t he remember anything?”  

“Less than 100% control over seizures is not acceptable? Our Doctors continued to want to push additional meds, not really paying attention to the fact that our 7-year-old is taking a dose that a 16-year-old would need”  

I thought. There’s got to be another way.

After 2 years of studying and connecting with cannabis experts, doctors, other parents using cannabis for their epileptic children, cannabis producers, etc. Increasingly the findings that were coming up was that Cannabis could be a VERY real option for my child's health. 

“How? What strains? What Dose?  I can’t get my kid high and it needs to be legal. How do I find  a doctor willing to work with a pediatric patient?”  

There were just no reasonable answers so we just kept going with the Pharmaceuticals.

 “It’s ok Momma, I don’t mind taking my meds, I’m used to it,” says a strong boy to his frustrated mother.  

Then there’s a shortage of his pharmaceutical medication. They’re going to replace it with 3 others. Each with its own set of side effects.  

“Are you kidding me? NOOOOO!!!” 

 

The pharmacist actually cries for me. She’s been outsourcing Seadon’s meds for 6 months and there’s just none left and no other options than the ones she’s offered. And she knows what benzodiazepine withdrawal can look like.  

I go home and count how many pills we have left. EXACTLY enough to wean him safely, if I  start tonight. If this isn't a sign to trust my maternal instincts, I don’t know what is.  

I get on the horn with every person I know who knows anything about the world of medical cannabis. I know what he needs, based on what I’ve learned but I need a prescription and I need a doctor to work with, which I know I won’t find readily and I’m certainly not going to find  CBD dominant strains just anywhere. And it NEEDS to be safe and clean so I can know what  I’m putting into my child.  

3 days later, I’m in the passenger seat of my best buddy’s truck, driving 5 hours each way to go see friends of friends who are veterans and have insurance-covered legal prescriptions for cannabis and have put aside everything they can spare for my boy.  

I’m taking my son’s life into my hands but severe, irreversible liver damage, depression and suicide are not side effects I can swallow as a mother, so this is it. Cannabis has to be worth a try;  there’s no evidence to suggest that it could be life-threatening and it’s never harmed me or anyone I know.  

Fast forward a year and a half to Summer 2016. Seadon is safely weaned off of Clobazam (which is still in shortage) and has been seizure-free for over a year, thanks to one of the veterans who continued to supply us until we could get our own prescription. He did this illegally, despite the risks, and I am forever grateful for having that soldier in our corner, fighting for us while we fought our way through the system to find a doctor that would support us. And now, here we are,  standing in line at the cannabis clinic, with a group of men that are all clearly members of the same gang, with matching tattoos and broken arms, waiting, hoping this might be the day that we get him his “cards.” Every fiber of my existence is crossed in hopes that Nurse Jessica (or, Ferngully,  as we fondly call her), who, a few weeks earlier, had driven 12 hrs from Ontario, sleeping in a field along the way, to help us make a connection to a shady guy who could get us what we needed, hadn’t traveled all that way and slept in a field for nothing.  

We waited in line for a couple of hours with Seadon asking questions like: “I thought it was illegal to smoke cannabis? How come there are so many people doing it here?” and me explaining that they were likely medicating just like us and that the laws don’t always reflect what is best for people. Then we were admitted into a closet where we spoke to a really cool doctor from BC on a tiny computer screen.  

I had a notebook full of questions that were all met with: “You’re doing the right thing Momma Bear, just keep doing what you’re doing - it’s working!”  

But I wanted more. I wanted to be educated by a professional. I wanted the scientific evidence to prove what I was doing for my son was legitimate. I wanted ammunition to bring back to all the doctors and cannabis clinics who turned me away and refused to even discuss the possibility of treating a pediatric patient with cannabis.  

But instead, we walked out none the wiser, with a 20g/day script, no paperwork, no dosing, strain, or method of intake guidance, no idea we need to apply to Health Canada for a permit to grow or choose an LP, and with the shady clinic owner at our heels offering to “buy” my son’s script off of me so he can grow it and just “give” us what we needed.… You’d think I’d be feeling deflated but I’ve got a smile beaming from ear to ear as I squeeze my son’s hand and say: “We did it.  We’re legal. The DPJ can’t take you away from me now for providing you with an alternative  treatment that has given us 100% control over your seizures.”  

So where does this kind of Momma Bear triumph lead a person?  

Where else? To a realization that good education is scarce and someone needs to do something about it.  

Fast forward to the present day. Seadon has been seizure-free for 6 + years since he started using cannabis; I have been using cannabis successfully for my own medical issues; I have completed a few cannabis certification courses and am working in a family medical practice providing education and guidance to patients whose doctors wish to prescribe cannabis to (incidentally, one of the doctors I work with was the first to deny my son a prescription for cannabis and both he and I revel in the irony of it) and I’ve been asked to provide education to a few hospitals, health centres, dispensaries, and patient associations.  

But one of the most fulfilling parts of this journey has been finding the amazing group of women I now work with on the Board Of Directors of EduCanNation Cannabis Education Inc. Just 3 years ago I was desperately preaching my “importance of standardized education and practice” sermon to the deaf ears of industry experts, clinic owners, medical practitioners, etc… I was alone with a vision of a more accessible, responsible, and sustainable medical system. EduCanNation was nothing more than a passionate Momma Bear with some big ideas and a nonprofit business plan.
 

Today I am no longer alone. Today, I am part of a community of like-minded people who have been through the trenches, just as Seadon and I have, and who have climbed out the other side with the same vision of a better future. Because we’ve all lived it ourselves, we understand the patient experience and the need to make it better.  

Education is the master key that opens the doors to a better future. EduCanNation believes we all deserve a copy of that key.