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 it’s 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 brings 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.
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