The Dark Side of Seizure Recovery That No One Talks About
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Two years ago I wrote a blog post about my daughter having her first ever epileptic seizure. Prior to that terrifying experience, I hadn’t truly understood what standing by completely helpless as your child turns blue could possibly feel like.
Once the convulsing is over, you’d think that would mean the worst part is behind you. But for parents of epileptic kids, the worst part is what follows.
My daughter is taking 3 AP classes. It’s her senior year, and she’s kicking ass with top grades in AP Calc, AP Chem and AP Psych.
Her neurologist decided to wean her off her seizure meds last month because she hadn’t had a single seizure in two years. She thought that it may have been a one and done, and felt that shifting off the medication would be beneficial.
Why is my pillow drenched in blood?
Friday morning my daughter stumbled into the living room in a daze, and said, “There’s blood everywhere.”
I looked up and said, “What do you…” and saw the entire left side of her face covered in blood, the source being a gash above her eye. I asked her what happened, and she said she woke up on the floor in the night, having no idea how she got there. Annoyed, she climbed back in bed not realizing that she’d just had a seizure, fallen out of bed, cracked her head open on a metal trashcan, and then bled all over her pillow from the head wound. The side of her metal trash can was bent into a u-shape. She’d also bitten her tongue into a bloody mess. She was struggling to move her left side.
I knew immediately that she’d need stitches, and a CT scan due to the severity of the blow, and we were referred to the ER. Being that she’s a teen and is very academically focused, she demanded that I allow her to attend classes through Zoom from the ER WAITING ROOM. Seriously, what kid wants to go to class that badly?!
Put down your phone!
So we got checked into our room, and she started getting tired. One of the nurses said we’d gotten there just in time, they were running out of beds due to a spike in Covid cases. I finally wrestled Mikayla’s phone away from her, and she fell asleep. I looked over a few minutes later and she was looking up to the left at the ceiling. I asked her what she was looking at, and she didn’t respond. I asked her louder in a panic and still no response. And then she started convulsing.
I started screaming for a nurse because all memory of the emergency call remote control attached to the bed fled my mind, and the ER doc shot back in the room to put up the bars and bar padding to keep her from convulsing off the bed. She started foaming at the mouth. She turned blue. It was a repeat of the horror show from 2 years ago. Then she was unconscious for what felt like eternity. I was sobbing hysterically, and kept asking the Doctor how she could have possibly gone from one seizure ever in her life to 2 in one day, if it was because of the head trauma, if she had a brain injury, if she could be having an aneurism, and asking him to please tell me as soon as she started regaining consciousness so I could pull it together, and not scare her. She eventually opened her eyes, looked at me, and passed back out. They put her on oxygen.
The infamous teenage eye roll strikes again.
When she came to again, she was confused, and had no idea that any time had passed. When I told her she’d had a seizure she said, “Yeah mom, that’s why we’re here,” and rolled her eyes in true 17 year old form. At that point she noticed that there were tubes in her nose. Then I explained that she’d had a second seizure and she was shocked, then said it made sense because of the excruciating headache. She fell back asleep.
She was taken for a CT scan, to check for skull fracture and brain bleeds due to the severity of the blow to the head that she sustained in the night. They ran every test imaginable to make sure there wasn’t any underlying cause that had set her off.
Thankfully the CT scan was clear, and the tests came back negative. The seizure was recorded and the report showed that her pulse had shot up from 68 to 131 and her blood pressure from 116/66 to 185/105. The numbers scared me to death.
So that was phase one. You’d think that would be the scariest part of your kid having a seizure. The convulsing and turning blue, and horrifying statistics… but it’s not.
I can’t move.
When she finally fully woke up she couldn’t move her left side at all. She was paralyzed fully this time. It’s a super fun side effect called “Todd’s Paralysis”. They kept us for observation for 4 hours, pumped her full of an entire IV of seizure meds, and set us back up with her previous script. Slowly motion in her left side started to return. Eventually we left with her in a wheelchair.
So you’d think paralysis had to be the scariest part right? It wasn’t.
Who are you?
She had a brand new personality. Not an, “I’m really tired from having a seizure so I need sleep,” change. A completely different personality. Angry, frustrated, anxious, etc. She was a completely different person.
At first I just chalked it up to her being understandably exhausted, and I made her wear her Apple watch all night so it could record her heart rate, and forced her to sleep in my room downstairs so I could watch her all night, since all of her seizures had happened while she slept and I was terrified that she’d have another one. I read all of the pulse scans on her phone periodically throughout the night (she’s given permission). This magical Apple Watch feature was the only thing keeping me relatively sane.
Saturday she was still exhausted, so I made her some soft food to avoid further injuring her swollen, bloody tongue, and she ate it and went back to sleep. I again, watched her sleep all afternoon to make sure she was safe.
That evening she woke up, and the new personality was still in place. I was concerned, but didn’t freak out, assuming she was just still really drained.
Then the scariest thing happened. The thing that people for whatever reason don’t discuss. Scarier even than the new personality.
I don’t understand!
She pulled up a video of a class she’d missed, and looked at me terrified, and said, “I don’t understand any of this.” Then her tears started. My straight A making, 3 AP class taking 17 year old didn’t remember any Calculus. Not only that, she couldn’t remember multiplication tables. She couldn’t read graphs. Equations were indecipherable. Passwords were forgotten, she had to reset them all. She was panicking.
I told her it was fine and that her brain just needed a few days to recover, then I ducked into the next room and immediately called her neurologist out of her earshot. Her neurologist said that some people, depending on the location in the brain and severity of a seizure, have lingering cognitive issues for days, weeks, or even months following, and that the new personality was also part of the equation.
The solution? We just have to wait it out.
What?!
How do you explain to your already panicked senior in high school that her brain is going to be offline for who knows how long in the middle of the semester. I contacted her head of school, and reached out to all of her teachers to explain what had happened. The head of school told me to have her take the week off to recover and said that we’d re-evaluate and come up with a plan at that point, depending on the progress she’d made. (Her school is absolutely wonderful.)
THIS is the dark side of epilepsy that people don’t talk about. I don’t know why it’s hidden away, I don’t know why it’s not discussed, I just know that it is absolutely terrifying to experience.
In the past when a friend, family member or acquaintance said, “My child/family member had a seizure,” I assumed it was probably very scary and felt bad for the person. I had absolutely no idea that “having a seizure” could lead to a new personality and weeks or months long interruption in daily life and cognitive function.
I relayed the feedback from the neurologist about giving it a few days, riding it out and going from there, and have been trying to sooth her anger and frustration, keeping her away from class work and lectures, because they just lead to more and more anxiety and tears. I can’t imagine how it feels for her to being going through it. Having your brain just switch off suddenly, wiping out skills that you take for granted until they’re gone, removing things you’ve worked your entire life to master, it’s just devastating. Watching her go through it is breaking this Momma’s heart.
Phone a friend.
So when a person tells you that they or someone they know had a seizure, know that there are an entire pyramid of levels of impact that seizure may have set in motion.
Epilepsy is a beast of a condition. I can’t imagine how difficult it is for people who have recurring seizures weekly or monthly, or daily cluster seizures in close proximity. My daughter’s on seizure three, and her life has been thrown into a blender.
Stress sets off seizure activity in many epilepsy patients, and as you’re aware, 2020 has basically just been an enormous cluster of stress inducing situations, start to finish. Reach out and check on friends and family members who are epileptic, especially if they mention that they’ve had a recent seizure. Ask if they need help. Offer to help them clean. Take them a meal. They’ll appreciate it more than you can possibly imagine.
And if you encounter a person having a seizure, here are some tips on how to help, courtesy of the Epilepsy Foundation:
