All art from
The Adventures of
Someday Mouse
by Katherine Brannock,
El Pantera Tattoo
“You’re looking for certainty,” my son’s neurologist reflected. I lowered by chin and raised my eyebrows with pursed lips. I’ve been Buddhish for over 20 years and work in the field of death and dying. I’m pretty sure I don’t believe in certainty.
And certainly not when it comes to epilepsy treatment. I saw this post on brilliant Elizabeth’s blog a couple days after this appointment and made the same face. She’d taken note of this delightful little feature called “Controversies in Epilepsy” that the medical journal Epilepsia uses to juxtapose differing takes on the same intervention. Her example below simply illustrates why our community has such a hard time being told that access to cannabis needs to wait for research (emphasis added):
1.) Dietary therapy is the best option for refractory nonsurgical epilepsy
2.) Dietary therapy is NOT the best option for refractory nonsurgical epilepsy
“Whatever,” I thought, as I added an eye roll. THIS is what we are working with. “When are we all going to stop acting like research is king?”
Myself included! That’s what I’d been probing the neurologist for that day - research to guide our next move. My son has his next neurology appointment in 6 months. If all goes as planned, he will have been 99.99% “seizure free” for 2 years at that point. If you are in this with me, then you already know the significance of that magic marker.
If you’re not, I’ll fill you in: Two years seizure free is pretty much everyone’s treatment goal. Because if you can make it 2 years without a seizure then you can wean pharmaceutical medications with a good chance of staying seizure free.
Says who? Says everyone! This is common knowledge in our community because this is our holy grail. I NEVER thought we’d get here and its an exciting place to almost be. But, if I’m going to rock my baby’s stable boat, I want more information. “Where does this treatment guideline come from?” I asked the neurologist and wrote down his reply:
- 60% of children grow out of idiopathic epilepsies
- 85 to 90% stay seizure free for 2 years if the patient has a normal 30 minute EEG
- 60 to 80% stay seizure free for 2 years if the patient has any abnormality during a 30 minute EEG
I’m making faces again. “Outcomes for just 2 years. That’s all we know, huh? What’s the reference? What’s the original resource?” I pressed him as if it mattered. I’ve looked for it in the past but have only been able to find literature reviews. Even though this research informs almost every one of our kid’s treatment plans and he has this same talk with parents multiple times a day, he can’t tell me off the top of his head. I guess no one asks. Admittedly I may be over thinking things . . .
Unsatisfied and fixated, I came home and went to the National Library of Medicine to take a second look and still couldn’t find it. But I did find these, Elizabeth, in the February 2011 issue of this research publication, The Journal of Neural Transmission (emphasis added):
1.) AED discontinuation may be dangerous for seizure-free patients.
2.) AED discontinuation may NOT be dangerous in seizure-free patients.
And they made me jump up and down, laughing and cheering, because I think I may have found what I was actually looking for: REALITY.
Reality shapes itself as we bounce our experiences back and forth between oppositions. And in the throws, the only thing we can be certain of is that we will each have our own unique experience. That we won’t know until we try. Very little, if anything, predicts our outcomes. And often we can’t close a door once we’ve opened it: “Your son could be seizure free for 2 years. You could start to wean his medications tomorrow. And he could go into status epilepticus and not get back to seizure freedom,” our neurologist reminded me.
Yeah, I’m not sure I’m convinced yet. Apparently luck has yet to be captured in the medical literature. Which is why I HAVE to talk to other moms. Nobody is capturing the magic that we weave. And the reality of our magic is that we are protecting, restoring and saving the quality of our kid’s lives. It is here, with these women, that I find HOPE. And hope is always what I’m looking for.
** Gratitude for the great meeting tonight, sisters. Beautiful to see so many new faces.
Thank you, Alison. It just amazes me how the universe works. I woke this morning, read my emails, and was replied to an invitation to go to an Epilepsy Foundation support meeting. This is what I said:
“We plan on coming tonight.
Just to update you; we started CBD Sunday morning. We did have a set back though, our sweet Ally had the worst seizure yet in 2 years. It happened as she was waking up Sunday morning (the beast showed it’s teeth….we were so excited to try something new and then it bit us back into our present reality), but we went ahead with the plan as soon as we could. Ally was in full tonic-clonic for 5 min. and then did not come fully out for an hour. She then had a nightmare headache, threw up, and then fell asleep until 2pm. She couldn’t speak for 1 1/2 hrs. into this and could not remember 3 words we gave her at all that day. I was going to say, “It sucked!” but no, it just hurt……
It took Ally, and us for that matter, 2 days to ground ourselves, but we continued with the treatment the second day and are still hopeful.”
After I sent this email, I then read your blog, and read the link to SE.
It was the information I needed. For every Yes article, there is a No. This is the diagnosis, REALITY, with a strong dose of HOPE…..it is what gives us the courage to stay the course, and continue on with our new therapy hope……it is our individual course of action based on our story. Together we stand, but on our own journey.
Again, thank you for your blogs. They are very personal, yet scientifically informative. Hugs!
Laura
See? Magic! Always! Thank you so much for sharing
Such a difficult decision to make. I hate to be in your shoes (but in REALITY, we all want to be there in your shoes - to have that choice to make). We are all striving to be where you are at with Robby. Why must you make a decision now? You’re right! What journal is correct? Question everyone and everything. You are on the right track. It’s hard to make that decision when science is never definite. Scientists just found out there are particles smaller than the atom. I say relish in your son’s miracle. What a gift you have. He has a lot of time and time will reveal more knowledge.
ONLY time will reveal. It’s so true, friend, that this whole line of questioning is completely premature and could be for nothing if he takes a turn. One day at a time. Literally.