If all goes as planned, my daughter, Julia, will start medical marijuana on Monday. (Say that seven times fast.)
Medical marijuana on Monday. This is really happening.
Julia started taking anti-seizure medication when she was 7 months old, following her first seizure and diagnosis of Infantile Spasms. In the seven years since then, she’s tried 13 different pharmaceuticals and various combinations of those 13 different drugs to hold the seizures at bay.
I’m not an expert on medical marijuana. If you’ve watched any of the CNN specials, you know about as much as I do. I am an expert on Julia though, and what I know is that these pharmaceuticals are hard on her. Yes, in many cases they’ve done their jobs, they’ve controlled her seizures — and for that we are blessed. But at a cost. They’ve delayed her development, they make her clumsy and agitated, and we really don’t know what they’re actually doing to her little body now and in the long run. There are no clinical trials we could find for 7-month-old babies taking varying cocktails of anti-seizure medication for seven plus years.
So as parents — the only true experts on our kids — we do the best we can. And right now, in this particular case, we believe that means giving Julia marijuana.
Most of the families who have preceded us in this decision to try medical marijuana have done so because other drugs haven’t worked and their child’s seizures have continued uncontrolled for hundreds a day — it’s no exaggeration. In that desperate place you will try anything, literally anything, including moving your family across the country to Colorado, knowing you won’t be able to leave once you start this drug. But you don’t care because when you watch your child seizing the only thing that matters to you is making it stop.
We’re in a slightly different situation than most of the families I just described.
First, we already live in Colorado. We don’t have to uproot and move to try this drug. We’re here, and it’s a fairly easy option to pursue.
Second, Julia’s seizures technically are under control with pharmaceuticals. When she’s on a medication, specifically Keppra, we don’t see seizures. Last fall she had a long stretch without seizures so we decided to wean her off all medication, due to our concern for what it was doing to her body. It was great to see her off all meds — her development flourished and her agitation went down — but after two months, the seizures returned, and we realized she will have to be on something to help hold them back. We temporarily re-started the Keppra, and right away saw her agitation and frustration increase. We decided now is the time for medical marijuana.
So rather than doing this because nothing else works, we’re doing this because we want to see if this works better for her. Could this be more than just a last ditch effort of desperation and instead just be a good treatment option for us to explore? I’m thankful we have the opportunity to do this.
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by Laurie Arnold AKA Julia’s Mom