Febrile Seizures - Our Story

My aim in sharing this horror story is to bring about awareness of febrile seizures and the aftermath. If left unattended, they could become far more serious. Please take some time to learn more about febrile seizures so you can act quickly and appropriately.

A friend shared a post with me today and due to the subject, I felt compelled to read it in its entirety and comment at length on it because it hits so close to home. My comment in response to I Heard God Laugh. And It Sounded Like Screaming — Velveteen Mind is as follows (edited by me for this post):

For those of you who may not know, my son, Keagan, has had two febrile seizures during his two and a half years of life. The first happened early last year, and by the grace of God, RIGHT IN FRONT of his Pediatrician during a well checkup. We were just about to leave as it happened and he became unresponsive and then seized. I'll never be able to express how grateful I was that if it was going to happen that it happened in the best place possible! It was terrifying and it has caused a great deal of PTSD for me. I have nightmares and constant paranoia about his health whenever he gets the smallest of common colds.

If there was a silver lining with that experience it was that it helped to prepare me for the next one that happened within two months. I was terrified yet able to keep my cool knowing that I absolutely had to in order to keep him safe while he was seizing.

The doctors have assured me over and over that these seizures are mostly harmless but it's sooooo hard to believe when you watch helplessly as they look like they are dying violently right before your eyes and there is nothing you can do!

The look on his little face still haunts me. His lips turned blue so quickly and the violent seizure was so terrifying. My only saving grace was that I had witnessed it before and knew I just had to try not to fight it and just keep him safe which meant holding him, but not too tightly and laying him down gently if need be so he wouldn't fling himself out of my arms or off a chair. It's overwhelming how mighty a seizure can make a child of that size. (If you know Keagan, he is already mighty!)

The other thing that still breaks my heart to this day is carrying the guilt that I inadvertently caused the second seizure and now how I have to make adjustments like not holding him so much when he is feverish. That is very hard to do since we are both so cuddly with each other.

When your child is sick, your first reaction is to want to hold them and cuddle them and make them feel better. The fact that they too want to be held and cuddled makes it that much harder. Here is where the problem started with the second. We were all sick and tired from being sick. He wasn't feeling well and so he wanted to snuggle. I fell asleep holding him on the recliner. At all but two years old, I felt it was safe to do so since he is a robust climber and very strong.

As we both lay sleeping, his fever rose so quickly and spiked because of my additional body heat while holding him. It wasn't until he started crying and begging for me to hold him more that it jarred me awake and then he started drooling and becoming unresponsive and began convulsing and vomiting on me. I was able to recognize it was a seizure right away. I always, always have my iPhone either in my pocket or under my pillow or somewhere within reach, so I quickly loaded the stopwatch app and timed the seizure while calling 911. I held on to him, but not too tightly and while it was so hard to do, just tried to stay calm, not panic and the 911 operator hung on with me as we rode it out and she sent first responders on their way to the house just to check him out as he came out of it to make sure he was really done. Bless those EMTs and First Responders!

Fevers and common illnesses are an absolute minefield for us when it comes to Keagan. We were all about letting the fevers do their job and prior to the seizures, we never rushed to medicate because whenever we did, it just prolonged the sickness. But, now with Keagan, we watch his fevers like a hawk and medicate as soon as it gets above 100. We track both the boys health issues in a logging app so we can see patterns if needed and just to be able to answer questions doctors ask that you never seem to know when you need to!

I must take a moment to plug (again) one of my all-time favorite apps from ANDESigned called Total Baby. Much like a fine wine, this app just keeps getting better with age. I've been using it since the developer gifted it to me to review when Keagan was born, back in 2009. For the first year, I used this app every day, several times a day. I still use it now when the boys are sick and to log their symptoms, medications, pediatric appointments, growth and milestones. This app is so incredible it makes me want to have another baby just so I can use it even more intensely than I did before! Ok, I know that's crazy geeky talk, but that's how much I love this app and all the hard work and love the developers pour into their product.

While dealing with Keagan's seizures, I reached out to my online community for support and felt that lifeline connection to perfect strangers offering their moral support when I needed it most. Keagan and I were just peacefully napping together and to think that my holding him was what pushed his fever over the edge makes me rest uneasy.

I pray for all our little ones that they outgrow these seizures and that they don't come back or cause any permanent damage. My heart breaks for the parents, like my cousin and her daughter, who have to go through this regularly and with grand mal seizures and/or epilepsy. I thank God these are just febrile seizures yet it doesn't change how terrifying and haunting the image of your child's face and lips turning blue right before your eyes and the helplessness you feel.

I wish the best of luck to Megan and thank her for sharing her story. It's so important for caregivers to look out for the warning signs early and know what to do! Awareness is crucial and could really save a life!

I hope this helps someone in their time of need.