WHY I GIVE MY SON CANNABIS
Let's be very clear, I didn't want to. In my complete aversion to now the most obvious, safe and natural course of therapy (hindsight is 20/20) I prolonged Eddy's suffering, pushing him as close to the edge of safety and sanity as possible before I even considered the alternative. I was so appalled by the idea of making my baby boy "high" on marijuana, I pumped him full of pharmaceuticals that a) never controlled his seizures b) subjected him to adverse side effects arguably worse than seizures c) completely changed the dynamic of relationship, possibly irreparably so. I'll always be the bad guy for my lack of critical medical evaluation in those early epilepsy days but I'm a fast learner and quick to repair my mistakes. Time for you all to learn from them methinks.
There was always something a bit different about Edward. Hard to put your finger on, difficult to articulate, challenging for everyone who loved him to admit. Clearly intelligent but challenged by some physical basics. Peering into those oceanic depths of blue that would see right into the core of you and then blankly stare at nothing at all, frozen in absentia. It was only 2 months ago on our first trip to see Eddy's Dad since I left him 2 years ago, he finally came face to face with the reality of what Edward's seizures are like for him, for me, and with tears in our eyes, did I finally hear him utter the word "epilepsy."
If you've just come across our story, you can get a bit of background here in this article written about us in Woman's Day a few months ago. Or you can giz a wee stalk on social, we're on Instagram, Facebook and Snapchat: wellfitmumnz. We're also very friendly in person if you see us sifting about. Do come say hi, we love meeting new friends. The long and the short of it all is, 2 years ago Eddy was having dozens of seizures during the day and night, primarily whilst sleeping but some scary clusters of seizures that went on for hours whilst he was awake. Prescribed meds weren't working and from the first time I tried CBD it stopped the convulsions immediately. Amazing stuff.
In those early days, I relied heavily on green fairies. Their contribution to society cannot be underestimated. A green fairy is a compassionate grower who cultivates medicinal marijuana strains for patients in need. Patients like us who were refused medicinal marijuana as a treatment for their condition/s, patients who are unwilling to take or simply can not afford the unsubsidised products currently available in New Zealand. The green fairies I have had the fortune to connect with are fastidious organic gardeners who wont pollute their plants with chemical sprays, growth hormones or other intensive practices that might engender adverse effects in the end user or the environment.
My ideal CBD company not only legitimises these incredible people it endorses ethical growing techniques and the best possible patient outcomes, it keeps NZ dollars in the NZ economy. Pity the law as it currently stands doesn't support this model. That's where you come in!
Once I tried CBD on Edward and I could see for myself its efficacy in treating Edward's seizures, I started seeking legal supply from his doctors. It was doing my anxiety no good doing things illegitimately but the push back from the medical community was even more daunting. Every week for a year I visited a different doctor - no one wanted to prescribe CBD to Eddy and even those that did, wouldn't because they didn't know how to or would but only the wrong product entirely. Titration and dosing confounds the medical community, probably because it requires patient participation and a degree of self-regulation. So I decided to educate myself.
Seeing as I was running the risk of receiving illegal goods by mail anyway, I started importing every CBD product on the market, in the world. I began testing them on myself - no way was I putting any more stuff in Edward I hadn't tried and tested for adverse effects. He's a child, not a lab rat.
Results were mixed. Some were totally dud (FDA reports on some 24 products from 8 companies reveal only 2 had the labelled amount on the bottle) - some made my heart race, made me peaky and queasy, others put me to sleep, some sharpened my focus and cut the mental chatter, or I felt I could run for miles. I definitely took too much on more than one occasion and just quietly, it feels horrid. Make no mistake, just because it is not psychoactive and not lethal does not diminish its capacity as a drug. Treat with the same respect as everything else in your medicine cabinet - noone pops an entire packet of Nurofen for a bad headache. That said, shit happens and if you do exceed your dose, dump 5 sugars in a hot cup of tea to level out your glycemic index fast. Eat. Wait.
What I learned is all CBD is not created equal. Lots of CBD companies are exploiting vulnerable patients and caregivers. Testing is problematic. Isolates are mostly useless. Heated preparations offset the entourage effect. Strains, cultivars, growing conditions and extraction methods are everything. Everything. Dosing actually fails as a benchmark for quality imho. It's pertinent no doubt, but the whole plant, how is grown, processed and delivery mechanism is key.
With continued use, Edward's seizures that used to go on for minutes which felt like hours are reduced to under a minute. The full body convulsions (tonic chlonic or grand mal seizures) are now only stiff limbed (tonic). Postictal phase is reduced too. The overall improvement to his/our sleep, emotional and cognitive function, relationships and quality of life is beyond compare. When nothing worked and night after night was haunted by the ghosts of epilepsy that came to steal our sweet dreams and happy tomorrows, those were dark days. I would not go back there for love nor money. I hope Edward forgets those early childhood experiences. I wish I could.
If you are living a nightmare of seizures, nausea, chronic pain, relentless anxiety, depression, fibromyalgia, Chrohn's, autoimmune disease, endometriosis, opioids or other prescriptions that make you feel worse not better - CBD might be a gentle and safe therapy to explore. I'm saying it because I was blessed to have a persistent friend in Arik Reiss, (Director of DrugLawed) who sent me randomised clinical trial after randomised clinical trial highlighting the capability of CBD in treatment-resistant epileptics. After our 2nd ambulance to A&E in one week I realised it would be hard to make matters worse and I started re-reading his emails in earnest. I'll be forever grateful for someone gently insisting it might help Ed. I'm here to be that voice of reason for you too. Auckland based patients should see Dr Gulbransen for a prescription, out of towners, you need to register your interest with your usual medical professional or seriously consider whether a roadie is worthwhile.
If you are from the greater Auckland area, I would love to chat to you too. You don't need to admit to using cannabis, I just want to hear what your symptoms are and why your current regime doesn't meet your needs. Illness and alternative therapy can be incredibly isolating. I'm here to tell you, you are not alone and your story matters. To me. To New Zealand. To the world. My dream is to provide accessible, affordable, easy to administer, full-spectrum CBD products to all New Zealanders who need them. To get there, I need to add your stories to mine. Help highlight the issue, push for change and crowd source funding to test my proof of concept. Let's deliver relief to Aotearoa and set the world standard for what safe, clean, natural health-care looks like. Please click here to register your interest for an informal chat on social video. I'd love to meet you and hear your story.
Footnote: I do have a few amendments to the WD article to clarify a few salient points for patients and caregivers. CBD is not the only complementary therapy Edward receives. We are also under the supervision of a gifted iridologist, naturopath, osteo/cranial sacral therapist, neurophysiological psychologists and he eats a mostly organic ketogenic diet - it's looser than it used to be but we still avoid sugar, sprays, additives, chemicals and refined carbs like the plague. I'm not sure about the word "cured" because it implies Edward is 100% seizure-free as opposed to further up the curve of his healing journey. His seizures really only resurface when his immunity is suppressed now but we try to take each day as it comes, rather than be overly outcome focused. We have more joy and peace, Edward is growing and thriving more than ever before and frankly, that's all I care about.
Wishing the same to you and yours, Katy & Eddy xx