The Day Our Daughter Had a Febrile Seizure
The scariest moment of my life was walking into my then-23-month-old daughter's room to find her lying unconscious on the floor. I can still see her in the corner of the room, passed out behind the diaper pail.
At first I thought she was being silly and hiding. And then I thought she was dead.
It's been two years and that room now belongs to her little sister, but even just looking over at that specific corner of the room sparks a trigger and takes me right back to that moment, where I picked up her lifeless body and screamed for my husband's help.
It was the day she had a febrile seizure.
It started out as a typical Saturday. My husband, daughter and I were hanging out at home when she started to feel warm. We took her temperature and she had a low-grade fever so we cancelled our plans and decided to lay low at home.
I was also 36 weeks pregnant so staying in sounded like the perfect way to spend the day. My daughter, who was almost 2 at the time, was like most energetic toddlers in that you can’t keep them still, but she was being extra cuddly and wanted to lie on the sofa and watch television.
I figured the fever was making her lethargic. I went to the grocery store to pick up dinner then swung by a friend’s house to pick up lavender essential oil, as we were running low.
How I Found Her
Summer was right around the corner so for dinner, we decided to grill out. My grocery store haul included corn on the cob, burgers and watermelon — the perfect summer dish. My husband was outside grilling the burgers and I was cutting up the just-boiled sweet corn. I remember shaving off one side of the corn and tasting it and thinking how much my daughter was going to like it.
Moments before, she had gone into her room to play with some toys. The kitchen is near her room so I was OK with her briefly playing in there unsupervised. A few minutes passed while the corn cooled down and then I called her to dinner. She didn’t come out so I went into her room.
At first I didn’t see her in there. I did a quick scan of the room and found her lying behind the diaper pail in a corner of the room. I thought she was playing a game and pretending to hide from me.
I called to her, “it’s time for dinner.” No response. I walked over and that’s when I saw a sight that has been permanently imprinted in my head: Her lifeless body on the floor.
The Moments Right After
I immediately picked her up. Her eyes were rolled back and I thought she was dead. She looked pale and was unresponsive.
I started screaming for my husband, who was still outside grilling and had music playing on the patio. He didn’t hear me. She was breathing, but it was shallow, and I started to notice she was having very slight convulsions throughout her body. They were infrequent and hard to observe, almost like a slow twitch.
I heard my husband open the back door and I screamed for him. I was holding our daughter in my arms and standing in the middle of her room. He came running over and I yelled, “She’s not responding! Call 911!”
Our First Ambulance Ride
We brought her into the living room and I sat on the sofa with her in my arms. I kept calling her name, hoping she would come out of whatever spell she was under. There was a clear moment during this chaos when I thought she might be brain dead and it broke my heart to think her lively 2-year-old spirit was gone. I started sobbing.
My husband was on the phone with the 911 operator explaining our situation and giving them our address. We’re fortunate to live right down the street from a fire station — those guys were at our house within minutes, if not seconds. A fleet of them arrived and surrounded us in the living room.
I kept her in my arms while they examined her and asked about her stats (height, weight, etc.). I explained the slow convulsions and they gave her some medicine that made the seizing stop, but she was still out of it.
They told me to quickly get dressed and get in the ambulance with her. I remember that I wasn’t wearing a bra so I ran into my room to put on some decent clothes and grabbed her security blanket on the way out. I knew she’d want that when/if she ever came to.
Up into the ambulance we went (my husband followed behind in our car) and I remember holding her hand the entire time with tears in my eyes.
“Have you ever seen anything like this?” I asked during our ride to the local children’s hospital.
“Oh yeah,” one of them responded. “We see this all the time.”
Pediatric Emergency Room
We arrive at the pediatric ER and it’s just like a scene from a television medical drama. She’s wheeled into a room on a gurney while a paramedic spouts her stats to the emergency room doctor and several nurses are poking and prodding her. She’s hooked up to machines and there’s nonstop beeping and wires everywhere. All the while, I’m right next to her, holding her hand and watching the chaos unfold.
Just as soon as we get settled into the examination room, she’s whisked away for a CT scan. I can’t enter the room because of my pregnancy so I wait in the hallway, which is its own version of a personal hell. After the scan is complete, she’s rolled back into the examination room. Things have settled down a little, she’s stable yet unresponsive (due to the drugs the paramedics gave her to stop the seizing) and we’re in the hospital computer system.
Finally, we take a breath. What happened to our daughter? And that’s the first time I hear the words.
“Your daughter had a febrile seizure, Mrs. Haskins,” the doctor says. “We’re admitting her to the PICU for a few days.”
I’ll just say it: baby hospital cribs look like little jail cells. I know it’s for their safety but it’s a heartbreaking thing to see, especially when it’s your sick child in there and all you want to do is lay down with them but you can’t.
We’re admitted to the Pediatric Intensive Care Unit around midnight and call our families with an update. Thankfully the room is large and there’s enough space for all of us — but it’s still a hospital room and it’s cold and foreign and obviously uncomfortable for my 36-week pregnant belly. We make a makeshift bed out of the lounge chairs and settle in for a long night.
Our daughter is still out of it and battling a fever. She lays in her hospital crib, hooked up to a dozen wires and machines that are constantly beeping. The nurses come in on the hour, every hour, to check on her. They’re so good at staying on top of it. We get no sleep.
What’s a Febrile Seizure?
It doesn’t matter because I can’t sleep anyway. I have too much adrenaline in my body and the baby inside my belly won’t stop moving around. This is when I start my research on febrile seizures. I find out a few facts about them that allow me to take some cautious sighs of relief.
First, I learn that febrile seizures are quite common in children under the age of 5 and that they eventually outgrow them. Second, I learn there are no long-term effects on brain development. Third, I learn they are triggered by a sudden surge in body temperature, which is usually brought on by an infection of some sort. The body gets too hot, too fast so it seizes as a way to shut down the brain and protect it from permanently getting damaged.
The reason children outgrow this around the age of 5 is because that’s usually when their bodies are able to self-regulate their temperatures.
This is starting to make sense. I remember checking my daughter’s temperature right before I started cooking dinner and it was hovering around 100 degrees. I also remember making a mental note to give her another dose of ibuprofen after we ate so she could have something in her stomach. We never made it to dinner because she seized, but I remember the paramedics checking her temperature and it was 104 degrees.
If I remember this clearly, it was roughly 30 minutes between when I took her temperature and when the paramedics did. So in that short span of time, her body temperature spiked four degrees, which brought on the seizure. That’s not normal.
A few days after being released, my daughter started getting red bumps on her hands and knees. You guessed it, hand-foot-and-mouth disease. That’s what triggered the fever in the first place.
Instead of ABCs and 123s, it was EEGs and MRIs
In the wee hours of the morning, our daughter starts waking up. She is groggy and screaming. She has no idea where she is or what’s going on. For a brief period of time, she doesn’t seem to recognize my husband or me. We panicked inside — what if her memory is gone?
We eventually get her to calm down and she starts to figure out who we are. I run down to the cafeteria to get her some breakfast: cereal, yogurt and some fruit. She’s never had Cinnamon Toast Crunch before — it’ll be a treat, I think to myself.
The next two days were filled with every test imaginable: an EKG (the doctor saw a small irregular rhythm in her heartbeat), an EEG and an MRI. Those tests are tough on adults so imagine having to watch your child go through them. The EEG is a 90-minute procedure to test for epilepsy and it required her to stay still the entire time while having dozens of wires with sticky patches connected to her head.
Suffice it to say, it was not an easy task to keep an almost 2-year-old still for that long. To make it even more gut wrenching, the typical protocol for EEGs on toddlers is to wrap their arms and upper body in something that looks like a straitjacket so they won’t try to rip the wires off. My husband held her down for 90 minutes with his iPhone above her head, playing Daniel Tiger episodes until it was over. I don’t know who was braver, him or my daughter.
Next came the MRI, which required her to be anesthetized so she wouldn’t move during the test. This one broke me. It was the end of a very long day — one where she had to fast for eight hours — and it had only been a couple of hours since the EEG. I remember holding her hand through the hospital crib as she was being wheeled down to the MRI room. They have to keep the top closed as a safety precaution and she was just screaming and crying. I walked alongside her, crying with her.
When we got to the room, they opened the top of the crib and I immediately picked her up and hugged her. We were both crying. I couldn’t let go and subject her to another scary test, but I had to. After she was wheeled back for the scan, we were told it would be one hour before she was done. We walked out into the hallway and I collapsed into my husband’s arms. This was all just too much.
Two things that came out of this: 1) I learned how strong and resilient my daughter was. 2) Every test result came back normal.
So, there’s that.
Being Released and Coming Home
After three harrowing days and what seemed like endless testing, my daughter finally got the OK to be released. We realize how fortunate we are that all of her test results came back normal and she had a clear bill of health, but we were more than ready to go home.
Our PICU stay was a little longer than most febrile-seizure related stays because, first, they wanted to monitor the irregular heartbeat (which turned out to be nothing), and, second, during the ER examination, the doctors realized she was concurrently having another seizure that stayed with her for a prolonged period of time — something very slight and small but it was causing some drooping on one side of her face and body.
Due to this discovery, they diagnosed her with a complex febrile seizure, which is why she had to undergo so many tests. We were discharged with anti-seizure medicine, a stack of paperwork and instructions to follow up with our pediatrician and the pediatric neurologist.
The Weeks Right After
The next few weeks were packed with follow-up appointments and specialist consultations. We wanted her post-care to be rock-solid and thorough. The thought of her seizing while I was home with her and a newborn was terrifying, so we worked diligently to make sure she got the “all clear” from her doctors and that we had a clear plan of action should she seize again.
Somewhere in all of this, our second child, another daughter, was born. She was a huge source of light and happiness during this time. I was admitted into the same medical center to give birth, exactly one month after my eldest was admitted to the PICU.
I remember our pediatrician, who we love and fully trust, telling me something very reassuring. She said you could line up 100 kids and you couldn’t tell which ones had experienced febrile seizures and which ones didn’t. That was her way of saying there’s no indication of any long-term brain damage effects.
Neurological Follow-Ups and Funny Tests
We were instructed to follow up with our pediatric neurologist three months after being released from the hospital. The doctor gave her a neurological exam to test and observe her motor function, balance, sensory skills and reflexes.
She was asked to hop around the office on one foot, throw a ball, skip and jump. The doctor also lightly tapped around her various parts of her body with an instrument to see if she could feel the touch.
She passed with flying colors and we were told to come back in six months. At the six-month exam, she did great and the doctor told us she had re-examined her MRI scans and felt our follow-ups were no longer necessary and that my daughter was developmentally healthy.
She basically kicked us out of the office and said we never had to come back. That felt great.
Hard to Find Support
Throughout the PICU stay and the weeks after, I leaned into several online moms and community groups to see if anyone had a child who’s experienced febrile seizures.
I’d hear about distant associations like, “My friend’s neighbor’s kid had one” or “A kid in my child’s daycare had one,” but it wasn’t easy to find someone who had gone through the same experience. I was lucky to find one mom, a friend of my husband who lives on the other side of the country, who could offer support since one of her children had febrile seizures years ago. But for the most part, I got crickets.
For a condition that’s so common — according to the National Institute of Neurological Disorders and Stroke, part of the National Institutes of Health, febrile seizures are the most common type of convulsions in infants and young children and occur in 2 to 5 percent of American children before age 5 — I was shocked to see how little information and support was available for families.
How She’s Doing Today
Today, my daughter is a vibrant, silly, spunky 4 year old. We have anti-seizure medicine that we keep with us, just in case, and we also have another dose at her school, where I’ve trained her teachers on how to administer the drug. (It’s essentially Valium, who knew?).
Every six months or so, we freshen up on protocol: lay her on her side, administer the medicine and start the clock. If she’s still seizing after three minutes, call 911.
Seeing my daughter lying unconscious on the floor is an image that’s seared into my brain. I felt so helpless because I couldn’t get her back to me. Now we know what to do if it ever happens again — knowledge I hope I never have to use.