Nothing Prepared Me For My 2 Year Old’s Febrile Seizure

Trigger warning: This post is about a toddler experiencing a seizure. He is okay, but I’m going to describe some scary things. If that’s too much for you to take in right now, please know I understand and hope you will click away. 

“Mom, the baby is acting… funny.” 

It wasn’t what Leyna said but how she said it that caused concern. We were hauling our RV down the highway, making our way from Charleston, South Carolina to Florida the day after Christmas. It was a long travel day, but Wallace, who just turned two on the 21st (and I hate that I haven’t been able to blog about that yet!) is usually the easiest traveler of the 4. 

He’s still rear-facing, so we rely on Leyna (who will be 8 tomorrow) a lot to give him the things he needs and let us know when he gets fussy. She’s seen him in some moods, you know? And she’s never said he was “acting funny,” especially not with a quizzical tone. 

I reached my hand back and thought I felt him throwing up on himself. He did that in the truck nearly a year ago to the day, and I figured it was a repeat performance. But then I felt him jerk his head forward and back and forward and back. Scott urged me to unbuckle and get eyes on him as he moved across a couple lanes of traffic to find an exit. 

I immediately noticed how rigid Wallace was. It was hard to get him out of the seat because his legs and arms were stuck straight out. He kept lunging forward and back, not making a noise. As I hoisted him over the seat, I saw his eyes rolling back in his head.

It was as horrific as it sounds. We immediately thought he must be choking. Scott grabbed him from me, while also navigating an exit with a 43 foot fifth wheel behind us, laid him on his knee, and began performing the Heimlich.

I… stared at my phone. 

I don’t know what happened. My brain could not figure out how to dial from my iPhone. I think I tried pressing the “keypad” function and it didn’t come up. I can’t remember. I just know that by the time we pulled over on an access road, Scott was shouting, “JILL, WHAT IS HAPPENING? WHAT IS HAPPENING??” While he pounded on our non-responsive toddler’s back over and over with fear in his voice that I have NEVER heard in all the 18 years we’ve been together.

I don’t know if he was asking that in reference to Wallace or in reference to me suddenly finding myself unable to operate my own phone for the simple task of calling 911, but I didn’t waste time asking. As soon as the RV stopped, I jumped out and screamed at the people stopped behind us to help. I feel like I screamed forever until someone finally came out of the car. I’m sure they were super confused as to what was going on, but once they saw Scott appear next to me on the sidewalk with our toddler’s limp body, they ran out with phone in hand. They were already on the line with 911 directing them to our intersection.

At that moment, I turned back to Scott and he said, “He’s breathing. Oh my God. He’s breathing. He opened his eyes. Thank God. He’s going to be okay, Jill.”

He still didn’t look “okay” though. He was totally out of it, not responding, limp. But yes, breathing. 

Scott told me tonight that at that point he breathed a sigh of relief simply because he wasn’t prepared to say goodbye to his baby on the side of a road. That at least the breathing bought us a little more time with him. That “okay” just meant he wasn’t dead. Yet.

We truly thought he was dying.

The fire department arrived first, and fast. Time is hard to mark, but I really think they were there within a minute or two. I walked him down to the intersection to meet them and Scott got back in the truck to pull  the RV into a parking lot nearby. 

Anytime I’m really scared on an airplane, I watch the flight attendants and tell myself I can’t freak out until they do. And this time I watched the calm and collected helpers- the firefighters and the EMTs. They were constantly in communication with me, asking if he’d ever done this before, what his health history was, had he been sick?

Yes. He had a fever the night of his birthday that I thought would turn into an awful flu because Lowell was dealing with it and he had been so sick for a week. Lowell was the one we were worried about. Just two nights before, we debated if we should take him to urgent care because the flu was kicking his ass so hard. 

But Wallace had that one high fever, and then a couple doses of Motrin seemed to set him right. Yeah, he had a runny nose and a cough, but he was full of energy, and his fever never seemed to spike again.

We usually shy away from using fever medication if the fevers aren’t too high and the kids don’t seem bothered by them. That was Wallace. He had a low grade fever off and on from the 21st, and we gave him Motrin mostly at night to help him sleep. By the time the 26th rolled around, it had been 36 hours since we last gave him Motrin and I honestly thought he got lucky and just had a cold, not the flu. Or maybe a mild flu that had passed.

When the EMT explained to me that he was exhibiting classic symptoms of post-seizure, I kinda freaked internally. SEIZURE. That sounds so so scary. Something is wrong with his brain, I thought. She said they wanted to start an IV before they began driving so they could administer meds if he had another one on the way to the hospital. ANOTHER? I couldn’t imagine watching that again.

After about 15 minutes and 3 failed attempts to start a tiny baby IV, she told the driver she felt pretty confident he was going to be ok on the drive there, and that calmed me a lot.  She explained a little to me about febrile seizures, but I kept telling her he hadn’t had a fever in over a day.

In fact, I was just holding him at a rest stop 15 minutes before this all started. He did not feel warm to me at all. 

Here’s the most important thing I learned about febrile seizures- they are brought on by a fever spiking FAST, not necessarily high fevers. So it’s very likely he had a normal temp when I buckled him in the truck and minutes later it began rapidly increasing. 

He was in fleece jammies and fleece lined boots, rear-facing without much air circulation in the back. I do wonder if that played a role. Scott and I are seriously considering turning him forward facing now, and please don’t comment with any kind of car seat evangelism, okay? We know. We will take it all into consideration, knowing that he’s at risk for more seizures in the future.

As we headed to the ER, I asked the EMT “Where are we?” After you’ve been traveling for a year, it’s really easy to lose track of where you are in the country. She told me they picked us up in Pooler, Georgia, and we were on the way to an ER in Savannah.

Pooler, Georgia, thank you. Your people were SO kind to us. By the time the ambulance arrived, there were about 10-15 people waiting with us. Some were checking on me and watching from a distance as the EMTs worked on Wallace, and some were over at the truck, talking to Scott and the kids. 

I found out later in the night that a man had prayed with the kids for Wallace and gave them a $10 bill while he watched them for Scott so he could come talk to me in the ambulance. He asked Scott to please text him an update. A good day in the village, indeed.

The ambulance ride was maybe 15 minutes? I can’t recall, but in that time Wallace went from mostly non-responsive to agitated and awake. I’ve never been so happy to hear him cry. Not even the day of his birth. 

I was able to carry him into the ER and he was totally lucid for all of the nurses to weigh him and check him in, though he didn’t say a word. He cried and was clearly really confused about where he was and how he got there. The rectal temperature check super pissed him off,  but I’m glad our nurse insisted on it. His initial forehead temp reading said 97, but the rectal temp read out 102. 

Is that a thing? Do some kids not get warm foreheads when they are sick? Is that maybe why I didn’t think he had a fever that day?

They did a nose swab to test for the flu, which he also detested and screamed about. Then the Child Life specialist showed up with a goodie bag for him. She asked me at check in what kind of toys he liked, and I told her he was pretty excited about cars and trucks. 

His goodie bag had a soft little teddy bear and a new Hot Wheels. He tossed the teddy bear aside, and his eyes lit up when I pulled the car out. His first coherent word post seizure was “CAR!”

Let me tell you, I will find a way to send all the toy cars to Child Life specialists across this country. Don’t think I’m not emailing my contacts tomorrow at Barbie, owned by Mattel, maker of Hot Wheels. It was MAGIC. That car brought him back to me. I took videos to send to Scott. He told me tonight that those videos of Wallace playing with his car was the first moment he felt like he really was going to be OKAY okay, not just breathing again ok.

So the tests came back, and he was Flu A positive. His 102 fever broke quickly with some Motrin and Tylenol. The doctor told me that basically everyone gets one free pass at having a seizure, especially when they also have a fever and a logical reason for a fever. All signs point to this being a febrile seizure, including the fact that I had febrile seizures as a toddler. 

So we are in watch mode. He got through the first 24 hours without another one, which is a good sign that hopefully it was a random, one-time thing. But he is at risk for more brought on by fever through age 4-5. We will need to be more vigilant about treating his fevers in the future. 

If he has more and they aren’t associated with fevers, then we will do more tests to rule out anything else, like childhood epilepsy. 

The ER doctor (Memorial Health University Medical Center pediatric ER in Savannah, Georgia) said that 6-7% of kids experience febrile seizures. That’s not a large percentage, but it’s certainly enough that it seems to affect more people than you think. Wallace is my 4th baby, and this is the first time something has happened with him that I’ve felt like I had no idea what’s going on.

So I hope by sharing this someone out there may have a frame of reference when this happens to their baby. For as terrifying as it is, it’s actually benign. There are no major complications from febrile seizures, and kids bounce right back from them within an hour usually. 

This is a very insightful Febrile Seizure Fact Sheet by the National Institute of Neurological Disorders and Stroke.

If anything, had I even known enough about them to consider  that’s what was happening, I may not have been standing on the side of an access road in Pooler, Georgia, terrified my 2 year old was dying, wondering if I should go tell my other 3 babies to close their eyes, to not watch him die.

24 hours later, Wallace is back to his Danger Baby ways- bouncing off couches and climbing onto counters. We are vigilant about taking his temperature and are giving him anything and everything he asks for. His dinner was nothing but Rolos and BBQ potato chips and I don’t even care. 

It feels slimy to end this post this way, but we are facing a pricey medical bill for an ambulance ride and ER visit on less than stellar self-employed insurance. If you would like to support us, please consider buying my eBook Picture Play (ShopBabyRabies.com). I’ve extended my Christmas sale. Use code HOLIDAYPIX to save $5 off the $19 price. We also have a gift card option if you’d like to gift it to someone else.

Picture Play will teach you how to use your phone and free & cheap apps to take and edit photos you will love, want to print & frame. Over 700 people have bought it in 4 weeks, and it’s getting rave reviews.  I’m very proud of it, and so grateful it can help us pay off these unforeseen medical costs.