Medical Marijuana – What I Think
As a reminder from Wednesday’s post, I’m only addressing medical marijuana, not recreational, and specifically as it’s used to treat seizures. I believe that any treatment should be used in consultation with a doctor that you trust. I’m not a doctor, though like many Medical Moms I’ve passed for one. None of this should be taken as medical advice. Lastly, any preconceived notions you have about the pot your friends smoked in high school, get rid of it because that’s not what we’re talking about.
I was raised by March on Washington, long-haired, tie-dye wearing, make your own dandelion wine hippies. We used homeopathic medicine, ate whole wheat bread, and shopped with cloth bags before it was cool. Perhaps that predisposes me to a willingness to consider alternative medical treatments.
Then there’s this; Aidan has intractable Epilepsy, as in, his seizures have yet to respond to treatment. They’re not as long in duration as they have been, and they happen less frequently than in the past. I don’t credit medication with that as his pattern changes at random. He has approximately 15 myoclonic tonic seizures per day lasting for 3-20 second each. That’s not so bad. It’s down from the 80 daily myoclonic, tonic, absence, and complex partials he was having that lasted 2 minutes plus sometimes.
Wait. Let me repeat that. He has approximately 15 myoclonic tonic seizures per day lasting for 3-20 second each. While there are plenty of Seizure Moms who would consider this victory, including me, I believe they would also agree that this is 15 seizures too many. It’s very bizarre to get comfortable with something assaulting my child’s brain repeatedly on a daily basis.
So would I consider medical marijuana (MM) to treat Aidan’s seizures? The simple answer is a resounding YES. I believe research needs to be done so the medical community can more appropriately support this treatment. However, I wouldn’t mind being the one to have the compelling testimony that is not completely backed up by research. Did you watch the video about Charlotte and Zaki? While they can’t make broad claims about the effect of MM, it worked for them. And you know what? I celebrate that victory.
I will have and do have tons of questions. To start with, would MM work on Aidan’s specific seizures? This may not even be a realistic treatment option for him, but I’d certainly like to have that conversation with his doctors.
To anyone who thinks this is a little bit crazy, that perhaps we Seizure Moms are putting our kids at risk, I hear you. That’s ok. It’s all a bit confusing. I hope we can learn from your questions and concerns. It will take research and lots of education and sharing our stories to get comfortable and make the best decisions.
Until then, please consider this; we Seizure Moms are forced to make horrible choices all of the time. Namely, is the treatment worse than the disease. Aidan has been on seven different medications which have at best not harmed him, and at worse turned him into a zombie. His seizures stole his ability to eat independently. I HATE them for that. Aidan’s Depakote stole his personality. I HATE it for that. And here I am two years later believing that 15 seizures are something to celebrate and that our medical journey is a walk in the park compared to others.
One Seizure Mom took her son in for orthopedic surgery only to have her surgeon say that the aggressive treatments they had to use to treat his seizures left his bones very fragile. This put him at constant risk for pain, dislocation and arthritis. Aidan’s latest medicine comes with the risk of a life-threatening skin rash, though the risk is decreased by starting the dose small as we did. With every seizure medication that fails, the next medication has less of a chance of working. The Medical Merry-Go Round is really a Doom and Gloom Machine. Many of us have put our kids on strict diets where food is medicine and our kids cannot enjoy a Thanksgiving dinner or birthday party in the same way. We send our kids to school nervous that one of the myriad of people involved in our kids’ care may not understand why a cracker is dangerous.
And then there’s this; some Seizure Moms are courageous and desperate and willing to take half their kid’s brain out to save their lives.
Did you catch that? Your kid’s brain in a bowl. Because that’s the best medicine had to offer. Can’t we do better than that?
So if you think we’re crazy to consider MM, I say this; we’ve been in Crazyville for a while. Here we’ve learned to ask questions, insist on answers, do our research and work hard to fight this battle for our kids. We can’t do it alone.
We need all hands on deck – scientists, number crunchers, legislators, doctors, people with Epilepsy, critics with thought provoking concerns.
Will you join us? My son deserves a seizure free life.