Author’s note: this was originally published in June, 2016. But I recently posted similar thoughts on Facebook and several said that I should put it in a blog post. So I’m updating that blog post.
Dear Everyone, Stop Asking me if I’ve heard of Cannabis for seizures.
I was going to post this in November, when I was doing frequent Epilepsy Awareness posts for the Awareness Month.
I didn’t because I thought it might be too bitchy.
But seeing as I have been approached no less than 10x this week with this advice, I have to say it.
Stop, just please stop, suggesting cannabis/cbd/marijuana to families struggling with seizures. We know that you mean well, but please don’t.
First, Kevin has seen 4 epileptologists, 3 neurosurgeons and more neurologists than we can even count. We’ve been from Philadelphia to NYC to Boston. Most families like ours have done the same. Do you really think that we haven’t considered cbd before? Do you really think that we haven’t heard of it?
Second, I am firmly in the camp of people who believe that cbd/marijuana were approved due to public pressure, not overwhelming evidence. We’ve been told by numerous doctors that we have a 50% chance that it will reduce 50% of his seizures by 50%. That’s it. That’s the data for Kevin and people like him.
The media loves to show us these stories of adorable children who were suffering like Kevin is, and how now due to the miracle of marijuana, they are living seizure-free. I’m happy for those people. I truly am. But they are not the norm. They just make for good news stories.
So you might think, “Well, ok, I hear you, but why not at least try? What if your child is one of the rare miracle stories?”
Because it’s not as simple as just going out, buying it, taking it, wait for results.
First, I have to get an FBI background check, complete with fingerprinting. Then, we have to find a prescribing doctor. This doctor will never have met Kevin before, I pay them hundreds of dollars in cash (they don’t take insurance usually) and then this doctor who has met my medically complex child one time will prescribe the cbd/marijuana and dosage. This it the part of the process I have the biggest problem with.
The science isn’t known yet exactly how cbd interacts with his current meds. And seizure meds are very complex. You cannot just start and stop them. You have to build up to a therapeutic level, do frequent blood work to monitor and so on. You cannot just stop a med, you have to wean down.
And no one knows exactly how cbd will affect this. Will it render his current meds useless? Or will it intensify them to dangerous toxic levels, possibly destroying his liver and kidneys? No one can answer that yet. And while his quality of life is poor now, I’m not convinced that cbd is worth the risk of Kevin having a crisis. When you’re having 50 seizures a day, having only 35 or 40 doesn’t improve your quality of life.
The last time he had blood work, it took me, my SIL and 3 nurses to get it. It’s very stressful and we do it quarterly, and he usually has to miss a half-day of school. Trying cbd could increase that to monthly or every two weeks. That’s too much stress on him.
Lastly, every time we are asked this, it’s just another reminder of having our hopes dashed. Because we too, see the news stories. We so desperately want to be those people, watching our kids live seizure free. So we pursued it, we read, we called, we visited doctors. And once again, were disappointed because it wasn’t for us.
Parents like me have spent many sleepless nights on our phone, searching, reading, hoping for hope.
So next time you see a family struggling with seizures, just a sympathetic nod, or a “that sucks, is there anything I can do?” is enough. Please don’t, “Hey, have you heard about cannabis?” Because, I can assure you, we have.
No, I don’t need to be right.
This blog post has generated a little bit of hate mail. Maybe not hate mail, but mail telling me that I’m wrong. That people are “just trying to help” so basically I should just stfu about it.
That’s kinda my point. In addition, the email telling me that, I have a bunch of email and Facebook comments from parents who are similarly situated, who said, “Thank you.”
And if you, like you say, “are just trying to help” then you would take this advice and not get all butthurt about it. Because most parents agree, this is not helpful. Rather than be offended at me telling you that your intended assistance is not helpful, heed the advice. Boom, done. Now, you’re helping.
Blog Post from June, 2016
Look, I know you mean well. Really, I do. You want to help, I get it.
But enough with the cannabis suggestions already, k? It’s not helpful.
My family is just now completing its first year of dealing with Kevin’s seizures, and if I hear “Have you tried cannabis?” one more time, I’m going to lose my shit.
Here’s the thing. Kevin was diagnosed with his genetic condition about nine years ago. At that time, we read everything we could about that condition, and we knew that he had a greater than 50% chance of developing seizures. And every day, I woke up and thanked my lucky stars that we were still checking off the “no seizures” column for him. That all changed last July.
Since then he has had stitches twice, due to seizure falls. More bruises than I can count. Yes, he has a helmet coming. But here’s the thing about epilepsy and Lennox-Gastaut–it’s a tricky mother effer sometimes. Just when you’ve had a slew of terrible days, fall after fall…..and you think that you can’t quite possibly take any more, it might stop or slow down for a day or two, or week, or month. And then you think, “ok, cool, guess he doesn’t need a helmet.” And then BAM. A bad fall.
We have had to cancel plans and we cut our vacation short last week because of seizures. He has only been in the custody of exactly three people: me, my husband or his teacher, and only those three people since the seizures started. He has seen four neurologists and had a half dozen EEGs since it started with more neurologists and another EEG next week.
When we got the Lennox-Gastaut diagnosis, I read and re-read every article and medical journal applicable to our situation that I could find. His one neurologist also sends me articles sometimes. In March, my mother-in-law and I drove him 350 miles one way, and paid for two hotel nights, just so he could see a certain specialist-epileptologist. I’ve networked with every parent I can find in our situation and lurk on several Facebook groups about epilepsy and Lennox-Gastaut.
So yes, I have heard of cannabis.
And as my friend Amber at Wonderbaby says, “Trust me, I know more about my child’s condition than you do.” And so I should. What kind of mother would I be otherwise?
I get it–it’s exciting, it’s intriguing and a bit unusual to think of taking a product that was previously so taboo, and using it for medicinal purposes–and on a child, no less!
But honestly, my patience is worn thin these days, as are my emotions, so when someone hears about our seizures and says “hey, have you heard of cannabis?” it’s annoying. I suppose I’m being rude by saying that, because you are only trying to help, but it needs to be said. Because I’ve had enough parents in my situation tell me how annoying it is, and I agree….so I will step forward and say it.
Last year, I sat with a neurologist and he gave us a bunch of options to read up on and pursue on this journey. All the different types of meds, the ketogenic diet, cannabis….and even a surgery that would remove part of his brain. Imagine that, if you will. Because I have known of several families who have done this. You agree to put your child through a type of surgery where they will open the skull, and remove part of the brain (the part where the seizures are occurring most often). Imagine being so desperate that you agree to this, even knowing that some of these surgeries only have a 50% success rate. Imagine being upset when you learn that this is not an option for your child because it’s not applicable to their type of epilepsy.
That’s the life some of us are living.
Kevin’s combination of Lennox-Gastaut and dup15 means that he has many seizures, many different types of seizures, and they are notoriously hard to control and do not respond well to medication. These are some of the hallmarks of those conditions. So when you say, “Hey, try cannabis” to me, it minimizes and trivializes the severity of his conditions. It also tells me that you don’t have even a basic understanding of what we are going through, or you wouldn’t suggest it.
Because we would do anything, absolutely anything, to make these seizures stop. Even have parts of our children’s brains removed.
I would love if cannabis would be a viable option for him, we are still pursuing. We know about cannabis, really. It’s honestly becoming as common as aspirin for a headache–everyone has heard of it. I love reading the success stories and it would be great if we could join them.
Before Kevin had seizures, once I saw the chatter about them in some of the Facebook groups, and I left the groups. Put my head in the sand, because I couldn’t bear witness to what those parents were going through. Now, I’m living it and it’s 100x worse than anything I’ve ever read about from other parents. Until you’ve witnessed it, you have no idea how horrible it is. I know Kevin’s every breath–I know what type of gasp he does before a myoclonic, I know his arm position right before an atonic….seizure moms are experts at reading every little message of body language. I’m on high alert every single day and can’t remember the last time I slept through the night.
So you’ll have to forgive me if I get a little pissy about your suggestion.
I have access to cannabis here, but a friend who doesn’t bring up a very valid point about what she feels when it is suggested to her:
For me it was just 1 more thing that might benefit my kid that we couldn’t access. I’ve heard of cannabis. Have you heard families are moving across country to get to it ? Have you heard some of them split up and mom and the kid with epilepsy move to an apartment 500 miles away so they can try it? That’s not a viable option. One seizure story that has stuck with me… Family had their first child. At 2 seizures started. Drs said its from a genetic condition . There was a minute possibility that any further children would also have this. So couple has baby 2. Age 2 moms excited. They passed that milestone. Before the child was 2 1/2 seizures started. Same genetic condition. Dad couldn’t handle the stress. So he left and divorced mom. Who at this point was sole caretaker of 15 and 13 year old wheelchair bound kids who had profound intellectual impairment. Wonder if she’s heard of cannabis ?
Because what we need is just validation and support. I remember the day that K got the Lennox-Gastaut diagnosis, and so many, again, well-intended people….they all said things like, “Oh you don’t know, he could grow out of it” and “why don’t you get a second opinion to be sure?”
But I had one friend who said just three words to me: “I’m so sorry.”
That is what I needed. That is still what LGS parents (and those dealing with other medically complex issues) need–I don’t need another treatment option to research, or another appointment to make….I already have more of those than hours in a day. We just need support and to know that you understand, or are trying to.
I apologize if this post is rude and not well written, jumps all over the place…but June has been our worst month yet. WordPress is telling me that the readability on this isn’t so great, but my give-a-damn is busted. It’ll have to do, because I just needed to vent.