How it felt to witness my daughter’s second seizure
Eleven days after my daughter’s first seizure we were shaken by another one. A week and a half was enough time for her to break the fever, return to daycare, catch another virus, and have another seizure.
It looked different this time. Frankie had gone down for a nap just 20 minutes after waking up for the morning. When I took her out of her crib a few hours later, she didn’t greet me with her usual sleepy smile. Having experienced this on two occasions now, I know that this change in behavior is potentially a sign of fever.
I took her to the rocking chair to feed her the breakfast she had skipped. Her head in the crook of my right arm, I studied her as she struggled to nurse. And then she let out a scream.
It was a cry I had never heard before. I’d never heard it because it wasn’t hers. It wasn’t her face that was contorted by the scream, either. It was a subconscious eruption of sounds sparked by an electrical surge in her brain. It felt as though I watched the scream from afar — an out-of-body experience looking down on me as a mother holding my young child the way a fearful parent does.
When the scream ended the convulsions began. With her in my arms I ran to the top of the stairs and yelled to my mom and mother-in-law, who were downstairs enjoying a nice family Sunday. They were at my side within seconds, and they remained there with me as Frankie thrashed.
This seizure lasted about two minutes — twice that of the first one. The postictal phase (the terrifying semi-conscious state one enters after a seizure) was longer, too. She moaned and whimpered, her eyes closed and tongue filling up her mouth like a wet sponge.
Her temperature was 103 and while my husband ran to Walgreens to get a Tylenol suppository (Tylenol to reduce her temperature, suppository because she wasn’t conscious enough to administer a drug orally) I lay by her side and tried to control her temperature. I had stripped her down after the episode but while recovering on the bed she began to shiver. That’s what’s tricky about fevers: you want to remove layers to allow heat to escape, but as soon as the body begins to shiver, you’ve moved backwards a step.
I wrote this essay to warn parents that febrile seizures exist, and I shared what I wish I’d have known prior to experiencing one. After having gone through a second seizure, there are a few things I’d like to add to my list:
- Reoccurrence is likely. A pediatrician told us the following statistics (something I wish I’d have known before the fact): 3–5% of children will have a febrile seizure before age two; of the children who have them, 30% will have a reoccurrence within one to two months.
- You’re not supposed to put anything in your baby’s mouth to prevent her from biting her tongue. The risk of a tongue biting is smaller than the risk of obstructing their breathing.
- The most important thing you can do is keep your child’s airway open by making sure her chin is away from her chest.
- Seizures are not just flailing limbs — the face gets involved too. Try not to focus on the distortion of your child’s face.
- When a seizure comes, check your pulse first, as you’re more likely to die watching. This was a lighthearted joke the neurologist told us to sympathize about how scary they are to experience, but I like his point.
The message, again, is this: febrile seizures are not harmful to your child, nor do they correlate to epilepsy. That said, the ER doctor suggested we see a neurologist, so we took Frankie in for an EEG.
Yesterday we heard the news that her scan was normal.
While I received a flood of appreciation from nervous parents for my first essay, I learned that awareness will not take away the fear of the situation. I wrote the essay to help parents, and still I was scared when I experienced it again.
It’s important to note that a second seizure is not a sign of an unhealthy child — it’s the sign of a normal child whose body reacts in a certain way to fevers.
The last thing I will say is this: subsequent seizures are only marginally less traumatizing than the first. But less traumatizing nevertheless.
If you’ve experienced a febrile seizure, I’d love to hear from you. Comment below or email me at Kolina.Cicero@gmail.com.