Febrile Seizures: What you need to know

We are quickly approaching the one-year anniversary of the scariest day of my life. It shook me to my core, and was most definitely life-changing.

Nearly one year ago, I watched my baby girl turn a shade of blue that squeezes your heart to the point of terror that words cannot describe.

That Friday started as a normal day, actually a pleasantly memorable day. It was Easter weekend and the Princess Cupcake had the day off from school. She and I spent a happy afternoon at the Arboretum dancing at the Eddie Coker concert and posing for silly photos in front of the flowers.  It was even a milestone day – we were in the throws of potty-training. Princess Cupcake saw her friend Nora go to the potty, so she asked to go to the potty too — and actually went – as opposed to going through the motions as we had so many times before ad nauseam.

We came home, were about to have a boring dinner and I asked her to try to go potty before we ate. She was distracted by the TV (no surprise there), so I asked her twice. She nodded. I carried her to the potty, she was tired and honestly, it was easier for me to carry her than to wait for her to get up and walk. I helped her with her pull-ups and positioned her on the potty.

While she was sitting there, she stared locked on something to her left. The best way to describe it is that she just zoned out. But then she started to fall backwards, so I grabbed her and held her up. Speaking very loudly to her, I desperately tried to get her to focus on me.  She was non-responsive.

I yelled to the hubs that something was wrong. Go start the car! We were taking her to the fire station that was about a ½ mile from our house. It would be faster than calling 911. A small part of my brain clicked to a time about a year earlier that was slightly reminiscent. It was the dark of night, she had been very sick with a virus and had just thrown up – the projectile kind. On that night, she was eerily unresponsive and I couldn’t get her legs under her as we were dressing her to go to the emergency room. Her head was pulled to the side and she wouldn’t focus on us no matter how loudly we yelled. It lasted an eternity of 2 minutes, but the second we were about to ditch the ER idea and call 911, she came out of it. And she was fine. It was scary and confusing, and she seemed completely normal after it passed. I attributed it to the fever — after all, she was pretty sick. I took her to the doctor the next day and he suggested that it could have been a febrile seizure — but we’d never know for sure.

So yes, at this point there was a flicker in my brain that maybe we were experiencing the same thing. She would come back to me in a second. But she WAS NOT SICK and so I my thoughts jumped to a host of other possible things that were happening in her tiny developing brain. That deviation from our previous experience dismissed my idea that this as a febrile seizure. And probably was a good thing because of that, we took immediate action.

As I wrapped her in her blanket and was sprinting to the door, the full body shaking began. Her little frame was trembling and I was holding both of us together with adrenaline.

Pardon my language, but we hauled ASS to the fire station, blaring the horn as we screeched into the driveway. I cradled her in my arms and banged my way into the station, panic completely engulfed me.

The firemen were the oasis of calm. They put her on a gurney, took her temperature. It had shot up to 104+. All assumptions were that this was a febrile seizure. Okay, I could deal with that…

But it wouldn’t stop. They had stripped her down to pull-ups only. Packed her in ice and it would not subside. They gave her valium. Nothing. Still seizing.

And then she began to turn blue.

Doors slammed, lights on. With a police escort, we shot off to the hospital, me clinging to her tiny hand for dear life.  I could see the panic on my husbands face as he drove our Expedition behind the bus, hazards flashing.

I was terrified. Please God. Do not take her from me. Not now. Not like this.

I can’t remember entering the hospital or what it looked like. My eyes were locked on my child. My hand superglued to hers.

20 minutes into the hospital, I pleaded for prayers on my Facebook wall. They flooded in from my wonderful friends and family.

And they worked.

After about 50 minutes at the hospital, the doctors finally got control of the seizure – or it had run its course – the bombardment of prayers shot her to the front of God’s powerful blessings. She was coming back to us. It was well over an hour since this nightmare began and I wanted it to be over.

Silent words exchanged between me and my husband were crystal clear. What the hell just happened?! Did she have brain damage? Was this going to happen again?

I still hadn’t let go of her hand – or stopped praying myself. The doctors admitted her to a room in hopes that we could stabilize her fever and get control of the virus they had determined to be the culprit. The mama bear in me was ready for a fight – no way would I take a seat next to her bed. I would be taking up residence IN her bed so I could hold my baby girl until we knew the danger was over and got the green light to go home.

Apparently they read my mind, or maybe my face, and before I could say anything to defend my position, the sweet nurses suggested that I hop right in there with her to comfort my sick little Princess. I was tucked before they finished their sentence.

And that’s how we spent the entire Easter weekend. Me cuddling my baby in the bed and the hubs next to us on the other. We were pretty confident that her little body had reclaimed control from the virus sometime Saturday night. She had even asked to use the potty again, she didn’t want to go in the baby diapers the hospital had provided her.  She was a “big girl.”

Our Sunday release was symbolic. The irony was not lost that it was Easter Day, the day our Lord and Savior rose from the dead. My faith had never been more cemented.

In conferring with what seemed like countless doctors (including a renown pediatric neurologist) nurses, as well as our amazing pediatrician during that weekend and the days after, we became well educated with the latest understandings of febrile seizures. I am not a doctor, so please, if your child is experiencing something similar, discuss your individual situation with your own pediatrician. Here is my febrile seizures 101 crash course:

• Febrile seizures are common. (This I knew). Acute febrile seizures are not. Most seizures last on average 2 minutes, up to 10. Princess Cupcake’s experience definitely falls into the mega acute category.
• Febrile seizures do not (in like 99% of cases or something crazy like that) cause brain damage. Even when your child begins to turn blue like mine did. Not to say there can’t be complications from it or the virus, but by and large, they are riveting to the soul of the parents but the kids come out of it fine.
• Contrary to popular opinion, febrile seizures are caused by a virus, not a fast rising temperature. They can and do occur with no fever as well.
• Therefore, giving a child Tylenol or something similar will not prevent a seizure or control it. Neither will the lukewarm bath or ice. Ice actually can shock the system adding another problem to the mix. Not to meniton discomfort.
• Febrile seizures often preclude the symptoms of a virus. As in our case, she was completely fine, had the seizure, then obvious signs of a virus developed. This makes febrile seizures particularly scary as you can have no warning before they start.
• If a child has one febrile seizure, their risk of having another febrile seizure – and a worse one — significantly increases.
• Children generally outgrow the risk of having febrile seizures around 5 – 6.
• In our case, we (us, teachers, babysitters) have to have a prescription valium-type suppository available to her at all times. Upon noticing seizure symptoms, we call 911 immediately. If after 3 minutes she is still seizing, we give her the suppository. If she is okay within 10 minutes, we’re okay to stay put. More than 10 or if the paramedics can’t get it under control, we get another ambulance ride.
• The valium suppositories are damn expensive. Of course we paid it, but insurance initially refused to cover it. Our pediatrician had to petition for it to be covered. Even with the coverage, it was about $400.  Cha-ching.
• Oh, and no matter how close you live to the fire station. You really should have them come to you instead because careful driving is not your paramount concern in a crisis situation.

The days following this life-altering event were very tender. I was deeply thankful she was okay – she bounced back alarmingly fast — but I was afraid to let Princess Cupcake out of my sight. Every sniffle, every cough, I was watching every breath from my little girl and sizing it up to see if it was normal. If she didn’t answer me right away when I asked her a question, my heart would skip a beat. (Still does, but not with the same intensity as 11 months ago.) Aside from my paranoia and our rather large medical accessory (it has made small purses out of the question), she is a completely normal child. Thank God.

As I said before, we’re approaching the year anniversary and her current temperature of almost 101 has me again glued to her side, remembering the horrors of that day and hoping to stave off a similar event. At least I feel prepared. (Kinda.) And I hope that by sharing this horrific experience, that you’ll tuck it back in your brain and heaven forbid, if you find yourself in the throws of a similar febrile event, you can draw strength from it and know that all will be okay.