My son had a febrile seizure at age 5…and it was terrifying

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The first year of my son’s life, I had no idea that febrile seizures were even a thing. As a few of my friends’ kids had them, I learned a little more, but they seemed rare and while I felt for my friends, I didn’t think we had cause to worry. Outside of a few (gnarly) colds, the occasional pink eye, a case of HFM, and one horrifying bout of croup that resulted in a panicked ER visit, my son was incredibly healthy. He never even needed antibiotics.

Until the other day.

He came home from school a little tired, but his generally happy and sassy self. Normal for a Friday afternoon. He had a snack, snuggled up on the couch and hung out. I noticed he had a little fever, but since it was just barely 101, I didn’t worry about treating him, just gave him some fluids and snuggles. After all, they tell us that fevers are good as long as they’re under 104. It went up to 102, but he wasn’t that uncomfortable so I decided to hold off on giving him anything until bedtime. 

And that’s when it all fell apart.

Less than a minute after I gave him Tylenol, as per normal, I looked over and saw him on the floor. At first, I thought he was just being silly, refusing to go to bed. You know, like anyone who is 5 going on 13 does. Then I realized something was horribly wrong.

Watching my sweet little boy seizing is the most helpless I’ve ever felt. There’s absolutely nothing to do but wait for it to pass. Somehow I remembered to turn him on his side, and I just kept rubbing his back, telling him “Mommy loves you, I’m right here,” hoping for it to end. 

And just like that, the seizing was over, but he still wasn’t moving or really responding and had some scary breathing and teeth clenching. Luckily my husband was home and able to call 911 and the police and paramedics were all here in short order. The whole thing from Tylenol to ambulance arriving was probably less than 10 minutes, but it felt like hours. 

Our area’s emergency services are phenomenal.

Naturally it happened on a Friday, when the house was a total chaotic mess, too. Dog fur and toys were scattered everywhere. The baby was naked. And the table and counter were piled high with things we don’t want the baby to get into. I wanted to tell them, it’s ok, we aren’t normally this insanely messy. But of course, all I could do was babble about my baby boy, while I ran to grab extra clothes for him, and tried to answer their questions.

Then we were in the ambulance. And then in the hospital. I cried with him as they tried to find his small veins and worked to get him to keep the medicine down.

I learned the hard way that the shows on tv get it all wrong. You know how parents on those shows generally answer questions in a calm and collected manner? I was a wreck. It was all I could do to remember his birthday and what was going on leading up to his seizure. And I even got that info wrong. We had to go back over everything a few times because I was such a hot mess.

After 6 hours and a battery of tests that I am not looking forward to the bill for, we were discharged with a pneumonia diagnosis and instructions to keep the fever down. Apparently my son is at the upper end of the age that febrile seizures happen, especially first febrile seizures, but he just doesn’t get sick that often.

What I’ve learned is that febrile seizures happen and no one really knows why, other than that they are related to fevers and they don’t really cause lasting damage to the child. But not every fever, and not every illness.

At our follow up visit, our pediatrician reminded me several times that no one is at fault, and there’s nothing you can do to predict them or fend them off. All you can do is ride them out, turn your child on his/her side, and move them away from anything that they could hit while seizing. And stay as calm as possible.  (Good luck with the calm part!)

I hope we’re once and done, but I’ll probably be extra paranoid about fevers from here on out. But at least I know what to do if it happens again.