Febrile seizures in toddlers are terrifying. Here's everything you need to know to survive and help your child with febrile seizures. Plus, learn what the future holds for your child with fever seizures…and it doesn't mean epilepsy.
This post on febrile seizures in toddlers was sponsored by Dell Children's Medical Center. All experiences, thoughts, and opinions are my own. This post is not meant to treat, diagnose, or otherwise replace professional care.
Febrile Seizures in Toddlers
It’s weird to be writing about this now that we’re on the other side. On one hand, it feels like a lifetime ago and on the other, it seems like it was just yesterday.
Somehow even though nearly five years have passed, the horror and fear linger on. The memories of Colby’s febrile seizures are burned into my memory forever. Scary, horrifying images that a parent should never have to see. Things that a child should never have to experience.
You might be asking yourself…what is a febrile seizure anyway?
Febrile seizures are seizures (convulsions) that are caused by a spike in temperature usually caused by an illness.
The first febrile seizure she had started after breaking out in a flat, nearly head to toe, rash. It was on day two that her face and feet started swelling. They never completely determined the cause of her seizures only being able to say it was likely viral.
What are the symptoms of a febrile seizure?
Basically, a febrile seizure is a fever seizure. Febrile seizures can happen at temperatures as low as 100.4. A lot of parents I know don't even give their kids medication at this point. Both times that Colby had fevers, she had super low-grade fevers.
The spike to 100.4 can happen fast. And it's the symptom you could easily miss.
What can't be missed are the convulsions and loss of consciousness. Even now, it makes me teary and sick to my stomach thinking about these.
Imagine seizures in a toddler. It's as scary as it sounds.
During Colby's first febrile seizure, she started doing it while being held. We placed her flat on the floor and her entire body started convulsing, eyes rolling to the back of her head, and turning purple.
We thought our 2-year-old was dying.
It was terrifying and something that couldn't be unseen.
What do I do if my child has a febrile seizure?
Call your pediatrician ASAP.
As with most times, kids get sick, both of Colby's seizures were on the weekend. I had talked to my pediatrician once the day of her first seizure to talk about the swelling. She gave me her personal voicemail in case but I was told to take her to the hospital if the swelling got worse.
I asked her if the pediatrician if the closest hospital was okay. Or if I should take her to Dell Children's Medical Center. I knew it was the best but it was also 22 miles away.
The doctor didn't even hesitate before telling me to take her to Dell Children's. She said other hospitals won't know what to do with her and would ultimately end up transferring her there anyway.
When Colby's fever spiked and she had a febrile seizure, I was actually leaving a voicemail for my pediatrician to let her know things weren't getting better and we were going to take her to the hospital.
To this day, she remembers hearing me say, “She's having a seizure.” Then my husband saying, “Oh my God, she's dying” before hanging up the phone.
If you can't get ahold of your pediatrician, call 911.
Should my child take an ambulance to the hospital after a febrile seizure?
You know your child and their situation. This is completely up to you provided they're breathing, conscious, and not vomiting.
We took an ambulance the first time, but not the second. I didn't want the drive to Dell Children's to take any longer than it had to.
Riding in an ambulance is never fun. This wasn't my first ambulance ride since I was transported by ambulance in pre-term labor with Brady.
This was the first time I had ridden in an ambulance with a child. With my child.
As you can imagine, Colby was miserable being in the ambulance. All of these strangers were poking and prodding her. They made her sit in her car seat strapped to the backboard while still parked at home. And they didn't have cute bandages or suckers. (Those same paramedics came back the next day with a huge bag of them to brighten her day.)
Thankfully while we were waiting to drive to the hospital, we could avoid a tantrum and get this Texas girl the pink cowboy boots she requested. I rode with Colby in the ambulance and my husband followed behind trying to keep up with Brady.
What happens at the hospital after a febrile seizure?
Your experience getting into a room used to depend on how you got there. If your child took an ambulance, they'd bypass the waiting room and a bed was waiting for them. If you drove the staff didn't know you were coming, so you usually had a short wait until they could take some vitals and put your child in a room.
That's all changed now. Dell Children's lets you schedule ER-visits online! You just schedule a visit online and then you can wait at home until your child's scheduled appointment time. Then, your child is seen within 15 minutes of this time! Waiting is always a struggle with kids but waiting with sick kids can be even harder, so this is definitely designed with kids and their families in mind.
And while your child is waiting, the waiting rooms are designed just for them. There are plenty of kid-friendly toys to keep them busy and their minds off why they're really there.
This was our first time in a children's hospital. And we found out that the “Topfer Emergency Center at Dell Children’s Medical Center is one of only five dedicated pediatric ERs in Texas and the only one in Central Texas”! How amazing is that?!
Everything inside Dell Children's is designed to put your child at ease. Just think lots of color, lots of characters, and lots of smiles.
Are there different types of febrile seizures?
The staff at Dell Children's was great about educating us about febrile seizures and helped to answer all our questions. Even the ones we hadn't thought to ask yet.
Unfortunately, there are different types of febrile seizures…simple and complex. Simple seizures usually only last a few seconds but up to 15 minutes. They aren't isolated to one part of the body and don't happen again within a 24 hour period.
Colby's febrile seizures caused her entire body to convulse, were only a few minutes long, and 13 days apart. So hers were diagnosed as simple seizures.
As if a simple seizure wasn't chilling enough. Complex febrile seizures are even worse. These seizures go on for more than 15 minutes, happen more than once in 24 hours, or affect only one side of the body.
Do febrile seizures mean epilepsy?
This was definitely one of our first questions at the hospital. We were told there were a few things that could increase her odds of epilepsy later like abnormal development before the febrile seizure, complex febrile seizures, or seizures without a fever in the child or others in the home. Since she didn't have any of these risk factors, the doctor felt pretty confident her febrile seizures would not mean epilepsy.
Who gets febrile seizures?
According to our doctors at Dell Children's and the research I've done online, febrile seizures are most common between the ages of 6 months and 5 years old.
Only 2-5% of all children have febrile seizures but you'd be surprised how many people you know have had a child with one. It's just not something anyone talks about.
Even though Colby didn’t have another febrile seizure again after the second one, my husband and I lived in a constant state of fear. When she started preschool six months after the last seizure, I noted that she was prone to febrile seizures and if she felt hot or even looked like she wasn’t feeling well to let me know as soon as possible.
Knowing that her fever could spike at any moment and another febrile seizure could hit put me in a state. The small medication stashes us moms carry in our purse continued to grow. No longer was it just some bandages and ibuprofen, it was now that plus acetaminophen in case we needed to alternate, a thermometer, and a syringe of diazepam.
What was the diazepam for?
The syringe of diazepam was a rectal medication prescribed by Colby's doctor at Dell Children's after her first febrile seizure. It wasn't to prevent febrile seizures but to be used if she did have one.
The doctor told us to only to give her the diazepam for seizures lasting longer than 5 minutes. And if we did use it, we also needed to call 911 and get to the hospital ASAP.
Needless to say, we hoped to never use it. And we didn't. But I carried that syringe in my purse for four years…just in case. Whether we were on vacation or spending a day at Sea World, that syringe and all of Colby's fever reducers went with us.
How is Colby now?
Living in constant fear of the next febrile seizure happening has been a part of my daily life until just a few months ago. It was a slow process, but I started letting go of the fear and accepting that Colby had most likely outgrown her febrile seizures right before she turned 6.
I work with a lot of companies on my blog and through social media, but trust me when I say that there has never been a time I’ve felt more passionately about one than this. Dell Children’s not only helped my daughter through both of her febrile seizures, but they gave us the confidence we needed to go home and not put her in a bubble.
My children’s health is something I don’t take for granted and something I’d never put in jeopardy. If you’re a parent in the Austin area, know that doctors aren’t always one size fits all. The staff at Dell Children’s are highly skilled and trained professionals that are the only people you want your little ones to see when something goes wrong. They know what to do and do it well.