In January, I was preparing for my 6-year-old daughter’s appointment at Cook’s Children’s Hospital Specialty Clinic in Fort Worth, Texas. About this same time, Attorney General Jeff Sessions rescinded the noninterference policy regarding states with medicinal or recreational marijuana laws. In addition, Oklahoma State Question 788 regarding medicinal marijuana vote was set for June 26, 2018. So, what do these have to do with my daughter? Simple, she is a marijuana user.
I know what you’re thinking. It’s what I thought when a physician first suggested cannabinoid oil: “I’m not putting my (then) 4-year-old on pot! Do they even make bongs her size?” I also wondered if I’d walk into her room to find empty Dorito bags and a 420 poster. But here’s the deal: My daughter has intractable epilepsy. Basically, she does not respond to traditional anti-epileptic drugs. Of those she has tried, she had severe versions of the side effects, which included aggression/anger, moodiness, painful constipation and insomnia. In addition, one drug did not control seizures at all, and another drug increased her seizures. In addition to her anti-epileptic medications, she is prescribed “rescue” medications of Valium, both an oral and rectal option. Febrile seizures (fever-induced) have resulted in many emergency room visits and/or calls to 911 and ambulance rides. There were times Valium did not stop the seizures, and first responders had to administer additional medications.
So, I did my research. Turns out cannabinoid oils — commonly referred to as CBD — are not psychoactive, so there is no “high” effect from it. Also, it is an oil. I use a syringe like her other liquid medications. Yet, I was still skeptical, but hopeful. She continued on her regular anti-epileptic medication while starting CBD. I had to do additional research about the therapeutic or medicinal level CBD. Turns out, not every product labeled CBD is what she needs. For seizures, she requires the CBD with trace amount (0.3 percent or less) of THC, which is what is allowed under current Oklahoma law. This summer at Cook’s Hospital in Fort Worth, the doctor told us that she is on a minimal amount of CBD for her size. To be on CBD alone, we would have to increase it three to four times the current dose. That would be $750-$1,000 a month, which is not affordable. We currently spend about $250 a month. Due to cost, she takes a minimal dose of a new anti-epileptic drug.
Here’s what I know since we started using CBD oil: In June 2016, my daughter’s seizures significantly decreased. Preparing for her appointment last month, I was pulling reports from a seizure tracking app on my phone (yep, there’s an app for that) that connects to a website. Looking back, she went from averaging over 40 seizures and 14 doses of Valium per month to averaging less than 1 per month with less than 1 dose of Valium. Over the past seven months, she has had only five seizures.
We have not called 911 or been to the emergency room in over nine months. This may not seem like much, but we are far too familiar with our local firefighters, emergency room staff and hospital staff. The last time I called 911, even the dispatcher recognized us by saying, “We’ve been to your house for seizures before, haven’t we?” Moreover, her speech delays are improving, her “flapping” has stopped completely and her behavior has improved with seizures under control.
As the vote for SQ 788 gets closer, I hear people say things like “addicts” or “potheads” just want it legal so they can “say they have chronic pain or glaucoma to get it.” My 6-year-old daughter is not an “addict” or “pothead.” People who are drug-seeking will always find a way; ask any doctor, nurse, pharmacist or veterinarian how often they have people seeking pain, ADHD and anti-anxiety medications.
I also hear that there is no research and information is anecdotal. My daughter is not an anecdote. Research on CBD or medicinal marijuana is limited in the U.S. due to restrictions on Schedule I drugs, but there is currently legislation at the federal level to reduce obstacles and increase research on medicinal marijuana.
My 6-year-old special needs child is not a pothead or anecdote. She’s my daughter and my world.
Tina Bevans lives in Broken Arrow. She is a special needs mom and social worker.