Marijuana is not my thing. I know there are many people who would say that it’s just a matter of finding the right kind, but I’m more of a glass of wine kind of girl. That’s just my taste. I’ve never been big on the legalization of recreational marijuana, but I also didn’t oppose it. I’ve been pretty indifferent to the whole thing.
Then intractable epilepsy entered my life. To date Connor has tried seven seizure medications. He is currently on three and being slowly weaned off one. All have the potential for some pretty serious side effects, and he still has 1-4 seizures most days. And we’re lucky. As much as his seizures suck and play a role in his delays, they are not nearly as bad as what other families are dealing with. (Knocking on wood) Connor has never had a tonic clonic (grand mal) or status seizure (requiring medical intervention to stop). I’ve never had to watch him thrash painfully on the floor, or see him intubated because he’s been pumped with so many meds to stop an unrelenting seizure that he stops breathing on his own.
That is the reality for many people, and Connor is at risk for this as well. I may yearn for full seizure control, but there are people that would kill for the degree of control we have. They watch their kid have 300 seizures a day and ER visits are a regular occurrence. This isn’t some random anecdote. I KNOW these people. Mostly online, but I know them (as I write this, Connor just woke up from his nap on the couch next to me and had a seizure within a couple minutes).
Some people oppose medical marijuana because they can’t see beyond Nancy Reagan’s “Just Say No” campaign. Others oppose it because we don’t have the studies to prove it or to indicate the appropriate dosages for pediatric patients. Some are just too caught up in the fact that people will abuse the privilege of medical marijuana by obtaining a card under false pretenses. Yes, people abuse it. They claim pain and just want to smoke weed. So what? The solution isn’t to punish the people that really need it. Shall I name a few of the far more dangerous legal medications that people abuse?
Unfortunately, thanks to the arbitrary demonization of marijuana, decades upon decades of opportunity for study have been wasted. The people who want to try MM for their children are desperate and don’t have time for politics. There have been countless stories of kids who have found their miracle in the form of a plant. That doesn’t mean it will work for everyone, and I’m not advocating it be a frontline med until we have more data, but it’s no easy task to complete clinical studies and gather that data when you are dealing with an illegal substance.
Among patients followed for as long as 26 years, initial response to drug treatments strongly predicted future seizure control.
Yet less than 1% of patients who failed to respond to three anti-seizure drug regimens achieved adequate seizure control on subsequent drug treatments even though some were treated with as many as nine different drugs or drug combinations.
The findings make it clear that epilepsy patients who are candidates for surgery or other non-drug treatments should be considered for these procedures earlier rather than later, says neurologist Patricia E. Penovich, MD, of the University of Minnesota and the Minnesota Epilepsy Group in St. Paul.
“These patients don’t have to wait until they have failed five or six different drug regimens,” she tells WebMD. “If their seizures are not controlled by the first few medications it is reasonable to consider surgery.
And when surgery doesn’t work? Or if you aren’t even a candidate for surgery? Or in the case of TSC, you have a successful brain surgery only to have another tuber fire up?
If you can stand in the way of desperate parents and individuals struggling against the devastating effects of constant seizures, then congratulations. You’ve clearly never seen your loved one suffer. But it’s selfish to further your own agenda at the expense of others.
There’s no more time to argue. We’ve wasted enough.
Paige Figi appears on The Doctors to share Charlotte’s story. (video)
A New York Times blog about the potential of medical marijuana and how the laws are preventing researchers from effectively studying it.
Medical Marijuana: a Patient Perspective, a patients’s use for depression and anxiety.
Paige Figi’s story and living with Dravet Syndrome (mom used to vote AGAINST weed legalization).
Dr. Sanjay Gupta’s essay on why he changed his mind on weed.
Would medical marijuana help Lorelai?
Parents suing the state of Arizona because their son benefits from MM.
A family that has had to split up in order to obtain the MM their daughter needs.
Boy with tuberous sclerosis and autism benefitting from MM.
10-year-old with Doose syndrome finally seizure free.
NYU medical conference on use in seizures and other neuro disorders.
Marijuana timeline by PBS.
- Weed Pioneers Look To Save Epileptic Kids With New Medical Marijuana Strain (huffingtonpost.com)
- Child with seizures to get medical marijuana (siouxcityjournal.com)
- More people accepting medical marijuana (wwlp.com)
- Parents demand medical marijuana for kids with relentless seizures (pennlive.com)