“I came here today with the hope that this administration would do everything possible, make every resource available—there is no reason this disease cannot be conquered. We do not need in fighting, this is not a political issue. This is a health issue. This is not a gay issue. This is a human issue. And I do not intend to be defeated by it. I came here today in the hope that my epitaph would not read that I died of red tape.” -Roger Gail Lyon to Congress in 1984, shortly before his death from AIDS.
“It’s a simple issue. Please don’t let my daughter die, Governor.” Father of Vivian who has Dravet syndrome, Brian Wilson, to Gov. Chris Christie
I recently became a member of a Facebook group about the use of pediatric cannabis, consisting of parents who are using medical marijuana to treat their children’s serious illnesses, as well as parents who are seeking to do so. As we live in Georgia, I fear we will be at the end of the list of states to make it available, but I’m wanting to keep an eye on things as you probably saw in my previous post. I simply don’t understand why people are so afraid of MMJ, but it’s okay that my son takes Onfi which carries this potential side effect.
Two members of the group have a daughter with Dravet Syndrome, a severe form of epilepsy. If you watched Dr. Sanjay Gupta’s special Weed, which featured Charlotte, the little girl in Colorado who had her life transformed by MMJ, you have seen what Dravet can do to a person. This family lives in New Jersey, a legal state, but one with some of the largest restrictions since Gov. Chris Christie shakes in fear that he is treading a slippery slope in which — gasp! — adults might get high just for fun. This family had just completed jumping through the hoops, completing paperwork and sending the $200 fee to the state last week. Her marijuana application is pending.
On November 27th Sabina Rose suffered a 25-hour seizure that caused brain damage and swelling. She died December 2.
But, hey, at least those darn adults can’t get high.
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.
Half of all epilepsy patients who are initially started on one anti-seizure drug remain seizure-free for at least a year, a new study confirms.
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.