Tag Archives: Cannabis

Medical Marijuana, Parenting, Tuberous Sclerosis

You can get Epidiolex in a month if your definition of a month is 210 days to years.

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Connor had a 48-hour VEEG a few weeks ago. It was awesome. Instead of waiting weeks and weeks to get into CHOA, we were given the option to use a company that comes to your house and hooks everything up. No hospital! God, it was beautiful. We had received the basic results, but recently had an appointment to discuss it more in depth with his neuro. I’ve been confused in documenting his seizures recently because they often have elements of his typical complex-partials, as well as his tonic-clonics. The EEG confirmed that his CPS (which are in one area of the brain), then generalize to the rest of the brain resulting in clonic seizures. He has a couple hot spots and it seems like every EEG seems to indicates a tradeoff in which is doing the dirty work. This time they all started in the right frontal lobe in the spot where he had surgery when he was four months old. Greeeeaaat.

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This is not to say the surgery was not done well or wasn’t successful. It made a huge difference in reducing his seizure activity. That removed tuber was the reason Connor spent 37 days in NICU at birth. But sometimes the area left that surrounded the tuber can still trigger activity. This means a second surgery to remove more of that area is an option. But the doctor already knew we weren’t interested in exploring that route, not before we try medical cannabis. Connor is currently being considered for a compassionate use trial of Epidiolex, the GW pharmaceutical using extracted CBD.

We’ve been somewhat quiet about that because we already got disappointed once. Despite Rep. Sharon Cooper and Sue Rusche of National Families in Action swearing up and down during  the last Georgia legislative session that we could all get into the clinical trials WITHIN A MONTH! JUST ASK YOUR DOCTOR! it was confirmed quickly what the families already knew. That’s. Bull. Shit.

Many families never had a shot at the trials being conducted by GW. They are focusing on Dravet and LGS. Plus, there is a lot of exclusionary criteria, such as having additional diagnoses. Many tried. Many were told no. One of those children, whose mom was assured she could get it, has since tragically passed away due to a seizure. He didn’t qualify.

Connor only has a shot because there happens to be a compassionate use trial here that isn’t limited to those two diagnoses. But it is very small, very expensive for the doctor and very complicated for a doctor to take part in due to the schedule 1 status of cannabis. So, sure, you can ask your doctor to look into this, but don’t hold your breath. However, the first time we thought we could be included, we found out Connor was excluded by GW because of his age. His doctor has since submitted paperwork to expand the age requirement and we are holding our breath for it to be approved. Sooooo, a month? Let’s see, the legislative session ended in March, so it has been at least seven since we were all told a month. And Connor is damn lucky he even has a shot at taking a part in such a small trial. Cross your fingers for him and us. Everyone else can just move to a legal state, break the law or wait the years it will take for Epidiolex to hit the market (and then hope that formulation is the one that will actually help).

Realm of Caring is also about to start shipping Charlotte’s Web, the the high CBD oil, made famous by CNN’s Weed with Sanjay Gupta. So the CBD options are slowly and fantastically coming our way, but should Connor be one of the cases that requires a different ratio of THC, we will either need to move to a legal state or hope Georgia can pass legislation in 2015 that will let us get what we need. The comfort level with CBD has skyrocketed nationwide, but THC is still demonized despite the fact that it is needed to treat many medical conditions. For now, we are hopeful that Connor will be one of the patients that responds well to CBD without the need for tweaking the ratio. It also remains to be seen how shipping the oil will play out due to the legal gray areas, especially for people in states with no legislation on the books. Certain politicians and people with authority think we should all settle for their word that they won’t prosecute us here. But tell that to Angela Brown in Minnesota who was recently arrested for giving her son CBD oil.

We’ll just be gnawing our fingernails, waiting to hear about the trial. Connor’s been having more seizures at night. His Emfit monitor was malfunctioning the other night (we were advised to adjust some settings which seems to be doing the trick), and now that I’m used to having a monitor that will alert us to convulsive seizures, I couldn’t sleep knowing it wasn’t on. I tried to sleep with Connor in the guest bed, but moving him woke him up and for the next hour and 15 minutes he appeared to be on speed. We played several rounds of “Got Your Nose” Scarface style –him grabbing mine, not the other way around. The bed and my head also made for equally sufficient trampolines. I finally gave up and had to put him back in the crib where he entertained himself for at least another hour. Life with epilepsy, ya’ll.

If you are interested in putting yourself on the wait list for Charlotte’s Web, go here. 

 

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Current Events, Medical Marijuana, Parenting, Tuberous Sclerosis

Get out of the way of medical marijuana.

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Medical Cannabis Growing Operation in Oakland,...
Medical Cannabis Growing Operation in Oakland, California (Photo credit: Rusty Blazenhoff)

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.

From WebMD:

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.

Articles:

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.

Families are having to move to Colorado to treat their children including this family battling infantile spasms.

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.

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