Things I Never Knew About: Febrile Seizures

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Everly at 20 months old.

I haven’t talked about this topic in a long time, but I’d like to bring it up again. In the six months after I wrote about the terrifying experience we went through when Everly had a febrile seizure, I received nearly a dozen emails from parents or family members of children who experienced something similar and because they had read my post, they knew what was happening and what to do.

The thing about febrile seizures is that I feel like no one ever talks about them despite the fact that one in every twenty five children will have one in childhood. ONE IN TWENTY FIVE. That’s a lot of kids.

I wish I had known about them when we went through it with our girl. Instead, I thought my daughter was dying. It sounds dramatic to say that, especially considering that her life was never in any real danger, but at the time I had no idea what was happening and to watch her just shut down, become unresponsive and stop breathing was the single most terrifying moment of my life. I sort of joked for months afterwards (because it felt silly to admit such a thing) that I had a little PTSD from it but looking back now, I’m pretty sure I did. Febrile seizures often reoccur and for the first six- eight months after her experience, any time Everly would get any kind of fever, despite my best efforts to control it, I would start shaking uncontrollably, tears would fill my eyes and I’d be terrified to be alone with her. I no longer react that way, although now, even 16 months later, I still get nervous when her temperature rises.

Below, I’d like to repost the original article I wrote for Babble on our experience in the fall of 2011. I feel it’s pretty comprehensive regarding what to look for and what to do. Please take the time to ask your parents and grandparents if anyone in your family has had fever related seizures as a child. They are most commonly genetic. It wasn’t until after Everly’s experience that we learned Brent’s mother had a very similar episode as a toddler.

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I’ve been wanting to write this post since last month. My then-20-month-old daughter, Everly, had a frightening febrile seizure caused by a spiked temperature. It was, hands-down, the most scared I have ever been in my entire life. She became lethargic and then unresponsive, completely limp, her eyes rolled back in her head, she began to drool and her lips turned blue. We called 911 immediately and it truly felt out of body as I screamed at the operator to please send an ambulance as fast as possible.  My eyes well with tears even thinking about it.

We learned later that febrile seizures are fairly common — 1 in 25 children will experience one in their childhood (The vast majority occur in children over the age of 6 months and end by 5 years old) We also learned that while extremely frightening for parents, they are typically harmless. When I shared our story with other parents I received so much feedback from others about their own harrowing experiences and I just kept thinking “If they are so common, why didn’t I know about this?” At the time, and it’s hard to even write these words, the thought ran through my head that my beautiful, vivacious daughter was dying in front of me … had I known the signs of a febrile seizure (I’d never even heard of them!) both my husband and I could have handled the situation with so much more clarity.

What causes them? Febrile seizures are most often hereditary. If you, your partner, or a grandparent had a febrile seizure as a child, your own children are more likely to get one. They are usually associated with fevers over 102° F (39°C) and are often caused by a quickly rising temperature. This makes sense in our case as Everly has had temperatures as high as 104°F in the past with no reaction — but her febrile seizure was brought on by a fever that rose from 100°F to 102.7°F in a very short period of time.

What are the symptoms: They can vary by child, but if you know your child has a fever and they become lethargic, disoriented, have twitching limbs, rolling eyes, are unable to stand or respond to their name it is most likely a febrile seizure. These seizures may be accompanied by drooling, vomiting or other mouth secretions. A simple febrile seizure should last no more than 5 minutes  (Everly was disoriented about 15 minutes before her seizure, became unable to stand or respond to us 3 minutes before her seizure and was completely unresponsive for about a minute or so).

What should you do: Place them on their side on a surface that they cannot fall from — like a blanket on the floor. Talk to them in a calm voice and reassure them as their body works through it. Do not hold or restrain them and do not put any objects in their mouth. If the seizure lasts for more than 10 minutes, take the child to the nearest hospital* to be evaluated and checked for other issues like infection. (In our experience at the hospital, Everly was tested for a UTI, pneumonia and any elevations in her white blood cell counts that might have signaled she had an infection)  If the child comes through it in less than 5 minutes, allow them to rest and offer fluids once they are fully aware. Make an appointment for them to be evaluated by your pediatrician as soon as possible.  Many people also treat fevers with an age-appropriate dose of children’s Tylenol or Advil (your pediatrician can recommend how much & how often).

Be aware that there is a 1 in 3 chance that a child who has suffered a febrile seizure will have another one should they get another fever. Knowing that febrile seizures are not harmful and how to comfort your child should they have one can make all of the difference in the experience for both parents and child.

For more information, visit the National Institute for Neurological Disorders and Stroke’s fact sheet on Febrile Seizures. Once Everly was better, I had a nice little emotional breakdown in front of our pediatrician as we discussed the experience (No, that wasn’t embarrassing in the least!) and she promised me that I would survive my children’s childhood. As I wiped away the tears, I made her pinky promise me that I would!

* I took that recommendation from the NINDS website but my personal, “I’m not a doctor just a mom who has been through it” advice is to call the rescue squad or take your child to the hospital immediately if this is their first experience with a febrile seizure. In my opinion- any episode, no matter how short, that causes your child to become unresponsive or stop breathing warrants being checked out immediately by a doctor. 

I hope all of you reading this will find this information useful and I sincerely hope that you will never have to use it. As with everything in life, knowledge is power and peing prepared and keeping our kid’s safe is important stuff. 

Love,

Melissa

Read my other “Things I never knew about: Lead Poisoning” post here.

If you have a suggestion for a “Things I never knew about” post regarding keeping kids safe that you’d like to share with my readers, please email me at dearbabyblog at gmail dot com!