Seizures aren’t something most parents think about but they’re more common than you might expect. Read our family’s experience with a childhood febrile seizure and what we learned. Fever-induced seizures in kids are usually nothing to worry about but they may need medical attention.
If you follow me on Instagram, then you already know that our sweet 4-year-old Vivian was in the hospital recently for a febrile seizure. While she’s home now and doing great, I’ve been surprised how few moms have heard of, or know how to react to these seizures. I hope putting our story out there might help another mom or dad know what to do if it ever happens to their child (excuse all the grainy phone pictures!).
For a big family, we’d been relatively illness-free this winter, until about two weeks ago when Finn (2), came down with a fever. He was really hot that first night and I sat up quite a while holding him. At one point, he started thrashing around in his sleep, almost like he was having a night terror. His arms, legs and body were all jerking at the same time, and it was pretty rhythmic. He was calling out for me and sounded really scared, so I talked to him, trying to wake him up from whatever nightmare he was having. It stopped after about 30 seconds, and then started again, only this time when I took him into the light, I saw that his eyes were open.
At that point I decided that it was most likely a febrile seizure (oddly enough, my sister had just witnessed one in my nephew a couple months ago). These seizures are common in small children (generally ages 6 months to 5-6 years), are hereditary and happen in the presence of a fever. The fever doesn’t necessarily have to be very high in these instances, but is usually caused by the rapidity of the fever’s rise. After the second bout of jerking, I cooled Finn as best as I could with washcloths and he went right back to sleep.
In the morning, I called the pediatrician’s office and talked to a nurse. After explaining the situation, she was pretty sure that it wasn’t a seizure, but advised keeping an eye on him anyway. Regardless of what it was, I am now very grateful that it happened, because seizures were fresh in my mind and I had spent some time researching them before Vivian’s episode (blessing #1!).
By Sunday, Finn was feeling much better but Marilyn (the baby) started a fever. On Monday, Marilyn was miserable, as well as Kira who had the same symptoms, along with vomiting. Kira was so sick, she slept for over 5 hours that day. Once or twice, Vivian told me her tummy was hurting and her forehead felt warm, but since she was still eating and playing normally, I figured it wouldn’t hit her hard until the next day.
At about 4:30 Monday afternoon, Luke called on his way home from work. I remember being surprised because he never comes home that early and he had no other reason for doing so other than because he felt like it (blessing #2!). A few of the kids took my phone and started talking to him, including Vivian. I let them finish talking to him while I went upstairs to fold laundry with Marilyn. When I heard Luke’s voice about 15 minutes later, I came downstairs with Marilyn to greet him. As I walked into the living room, Luke said, “What’s wrong with Vivian? She’s not looking at me.”
Vivian was standing next to the baby’s jumper and holding on to it. She had wet her pants and was standing in a puddle, staring off in the other direction. At first I thought she’d had an accident and wasn’t looking at us because she was feeling guilty. But as we both tried to get her attention, it started to dawn on us that something was seriously wrong. She kept standing there, very still, just looking off at the opposite wall. After about a minute of talking to her, she started making grunting sounds and spitting up saliva. I thought she was about to vomit so I told Luke to get me a towel, but when there was no vomit and she still wasn’t responding, we decided to call 911.
In the few seconds it took me to scoop her up in my arms, I realized that I could make it to the hospital faster than an ambulance (our neighborhood is less than a mile from a children’s hospital – blessing #3!). I grabbed my phone and wallet and told Luke to call my mom to watch the kids so he could follow me there. I ran out to the truck, laid her in the backseat, and took off for the hospital. While it’s barely around the corner from us, I had to drive about a half mile on a residential street and then go through 4 lights. All that slow driving and stopping and going was making me nuts! At one point, my leg started shaking so bad from adrenaline I was afraid I couldn’t push the brake.
I kept looking back and reaching for Vivian, shouting her name and trying to get her to snap out of it. At one point I noticed a small bit of shaking in her arms and hands. When I pulled into the ER driveway, I grabbed her and ran in, yelling that I needed help. At that point it all got really real and it was hard for me to even speak. They let me into the back where I managed to tell a nurse that I thought it was a febrile seizure. I laid her on a gurney in a room and then 8 or 9 people ran in , including an ER doc, respiratory specialists and nurses. They gave her oxygen, an IV and started asking me questions.
At that point, I remember sort of having two dialogues going on in my head. One was the rational adult who kept thinking “She’s going to be fine, this happens to kids all the time. She’ll come out of this and have no lasting effects”. All the while, my mom brain is saying “What if she never wakes up? What if she never smiles or laughs or colors on the walls again? What it, what if, WHAT IF??”
After taking her vitals they told me that her temp was 101 and that the seizure still wasn’t stopping on its own. A few minutes later, they decided to administer Ativan (an anti-seizure medication) and then, after the seizure began to subside, they decided to intubate her. Both a doctor and several nurses told me that this wasn’t unusual for a child to have trouble breathing as a seizure wears off, especially if it’s a longer one (i.e. more than 5 minutes, hers had been going on for about 15-20 at this point) and if it needs medication to be stopped. They kept saying “this is not unusual” but all my mom brain heard was “This isn’t normal.”
They ushered me out of the room to intubate her and to perform a lumbar puncture (it’s procedure to take and test spinal fluid in a seriously ill child with a fever to rule out meningitis. My younger sister had meningitis and spent weeks in the hospital so this has always been a fear of mine!) and while I waited, Luke and my mom showed up.
After she was intubated and settled, they took Vivian up to to the ICU and we spent the day there. It was kind of a traumatic several hours for me because, even though all the doctors and nurses seemed unconcerned, my baby was lying there with tubes in her, sedated and on a respirator. Not something any parent wants to have happen to their child. After the initial sedative was given, they wanted to see if she would wake up on her own and if her breathing was normal, they’d take the tubes out.
It was excruciating watching her try to wake up because it took SO long! She would move a little bit, groan and make other noises, and then as soon as the medical team assembled in the room, preparing to extubate her, she’d pass back out. This happened 5 or 6 times and she never opened her eyes all this time either so I was still freaking out that something else was going on. But, considering that Vivian has always slept like the dead and been impossible to wake up, I tried to console myself that it was just going to take time.
Sure enough, she eventually opened her eyes and began breathing well enough on her own for them to unhook her. I was able to relax a little bit then but it wasn’t until about 2am that night that she started speaking again and I started to breathe better! The nurse and I were moving her to get her vitals and she opened her eyes, looked at me and said, “Is it you?” in her cute little voice. It was the sweetest thing I’d ever heard! Then she looked over at the nurse (covered in a face mask and other protective garb) and said, “Who is YOU??” Haha. It felt good to laugh again and I was so happy to hear her darling little voice.
The next day brought an EEG (to check for any other reason that might have caused the seizure), bacterial culture results (negative) and nasal swab results (positive for two separate viruses). She also began vomiting because the illness was still raging through her little body and the fever was creeping back up. She threw up 3 different doses of Tylenol before we got her some rectally (Fun!) and the fever broke. I left the hospital that night to go be with the other kids (several who still weren’t feeling well) and Luke stayed with her that night.
The next morning I woke up to a picture text from him showing Vivs sitting up in bed and happily munching on fishy crackers. I was so happy! I didn’t realize how much I was still worrying until he called to say that her personality was totally back to normal and, since she was keeping down food, they were coming home later that day.
Before leaving, the neurologist told us that he thinks each child is allowed “one free seizure” without lasting harmful effects. He explained that essentially, children’s brains are so full of neurons that it’s quite common for a kid to have a seizure for a number of reasons. Usually the first one is nothing to worry about, unless they can find something else in the brain causing it. We were told that in the future, if she has another one, to lay her on her side and just let it pass on its own. Once it’s over, we should call the neurologist’s office and let them know (or call your pediatrician if it’s your child’s first seizure). If it lasts more than 5 minutes, or she has trouble acting normally afterwards, bring her into the ER or call 911.
At about 6 that night, Luke pulled in with Vivs in the backseat – we were all so happy to see her! We got everyone fed and in bed that evening and then Luke and I laid down in bed. I finally just had to let it all out. I cried and cried a good long while, I was just so overwhelmed with all the emotions of the last few days: fear, anxiety, stress and finally relief and gratitude.
UPDATE: Vivian’s now had a second seizure which, although scarier looking than this first one, I was infinitely more prepared for! Read that story here.
Looking back at it all, I realize that our little adventure was nothing compared to what so many moms and dads go through on a daily basis with their medically fragile or special needs children, but for our family, with its extremely benign medical history, it was pretty scary.
Since we’ve been home, I’ve also realized the blessings that come from seeing your child go through something scary: you are grateful for every second, every breath and every quirk, even the naughty ones. Vivs is our biggest cuddler and I’ve taken every chance I can get recently to just sit and hold her. In fact, just hugging her skinny little body, with her gigantic ‘fro of red hair in my face, just makes me tear up. I’m so, SO thankful for every moment with my children, even the ornery, obnoxious and frustrating moments.
This life brings a vast variety of experiences with it: good and bad, scary and peaceful, joyful and heartbreaking. I sometimes think that the joys of motherhood (and every other phase of life) should be found in spite of the sadness, stress and tears. But recently I’ve learned how so much of the good stuff often comes because of the bad stuff. It’s the dichotomy of these opposing forces that makes life so rich and full! When the bad comes (and it will) I’ve decided that I will accept it, learn from it, and maybe even embrace it, because after all, “weeping may endure for the night, but JOY comes in the morning(!)” Psalm 30:5