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. 


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17 Comments

  1. I can’t even imagine how tough that must’ve been.

    I picked up the e-book too, I skipped the discount code in hopes you’ll get a bit more for your pocket.

  2. I knew this would be a tough read so I had to wait for a kid-free moment. So here I am before sunrise, choking back sobs because you were “wondering if I should go tell my other 3 babies to close their eyes, to not watch him die.” Oh, Jill. I don’t even have words. Sending so much love.

  3. Oh, Jill! Had to make sure I was alone when I read this, because I knew I would be an emotional wreck. Not only does my heart hurt for you and your family and what you went through; this post brought back painful memories of my child’s first seizure, and the long, difficult journey that began that day. The situations were different. My daughter never had a febrile seizure. She had childhood epilepsy that showed up out of the blue when she was 3. But the emotions, the experience of going through this as a parent are the same. People often say, “I know just how you feel,” and they are empty words much of the time. But I truly do understand. I have walked in those shoes. I’m so glad people reached out to help when you needed it. We were in a park full of people when my child had her first seizure, and no one came forward to offer assistance, even as I was on the ground beside my limp child screaming (my husband wasn’t there). It will take you a while to come down from this experience. You will be anxious for some time to come. Be gentle with yourself. But the doctors are right. It is very likely Wallace will never have another seizure in his life. I did laugh at the, “one free pass” comment, because the ER doctors told us that, too. And it is true. An isolated seizure is just that. My heart is with you, and I pray you never have to deal with this again.

    • I can not imagine your fear and anger that nobody came to help you! I’m so sorry this was a regular thing for you all. I truly can’t imagine it being something you have to deal with often. Thank you so much for the love and support.

  4. So glad to hear he is okay! I love that you made the point that kids/people do suddenly spike fevers! And rectal temperatures are very important if anyone every feels their kid is really sick!

  5. So, interesting about the difference in temp from one sort of thermometer to another. My situation is opposite in that my kids’ foreheads feel warm when they don’t have fevers! (as does their father who I am convinced is part werewolf or something.) And their medical professional father always insists on a temp reading before fever meds. Can you tell us more about this organization that gave the car..Child Life?
    Also, and I know you said no comment, but I am going to put out there that you go ahead and you turn that car seat around if you feel it’s the right thing. 🙂 I’m all about doing what works for your family in those types of situations. And also, according to the most recent guidelines, I think my 41 year old best friend should still be in a car seat.

  6. We have not had to deal with a seizure. I can’t imagine what that was like, and to have it when they are facing back in the car and you can’t fully see. I am so glad there were other kind people there to be with you and help, and of course that Wallace is OK. I have picked up the book as well – I’ve been eyeballing it anyway – and left the code off as well. I hope that means you get a little extra profit in your pocket.
    Kudos to Scott for driving a truck and trailer while also exiting a highway and giving your child medical attention! Holy cow!
    So glad you are all ok.

  7. Jill,
    I am so sorry you all had to go through that! Thank you for sharing your story. I am a nurse and I swear, I’m not sure I would be able to act in an emergency situation with one of my kids. Seizures scare me! Again, thank you for sharing your story to help myself and others in case it happens to one of our kids!

  8. I cried through that whole thing. I am so incredibly happy that Wallace is ok. As a mom who has two of her four kids be in the hospital- in both emergency and non-emergency situations- I get it. Time stands still and also moves so quickly. It’s terrifying.

    The section on the child life specialist hit home for me bigtime. Two of my kids have been in the PICU multiple times and the child life specialists at the hospitals they have been in have been LIFE SAVERS! My son wouldn’t speak to anyone or do anything he was so angry at being sick and in the hospital – until child life showed up. I am eternally grateful to the doctors and nurses who have kept my kids alive but there is a different deeper gratefulness that I had for the child life teams I’ve interacted with. Like you said, they brought my babies back to me.

    I’m so so glad that Wallace is doing better!

  9. You might be able to have the kids on prorated CHIP (even with your ‘on paper’ income) and if they are approved you can get retroactive coverage for three months.

    The system is a mess and a struggle but it might be worthwhile to be able to forget about those bills and have less worries (over the kids at least) about any future ones.

    Feel free to not even publish this comment (it may be something you’ve already looked at/ruled out/etc) but I just wanted to make sure you knew the option was potentially there. I know discussing such things can come across wrong so please be reassured that no ill will at all is meant.

    Lots of love for what I know must have been a beyond terrifying experience. I hope you guys continue to process and heal.

  10. Jill, my heart went out to you when I read this! My oldest had a single febrile seizure and it was the most terrifying moment of my life – five years later I can’t think about it without tears in my eyes. I’m so glad that your sweet Wallace is on the mend and am hoping that you never have to experience one of those again!

  11. I’ve been in a similar situation with my oldest son when he was a toddler and it was terryifing to say the least. Even though it was years ago I still remember some of the sage advice his doctor gave me still. Probably a lot of which your ER doctor told you.
    Needless to say it worked out well for him and I’m hoping you’ll experience the same.
    One thing my pediatrician told me that I’ll share is that as a mom you should always trust your gut when it comes to your kids health. He said a mothers instinct is usually spot on.

  12. I could feel the terror and worry you experienced through your words. I am so sorry, and also so glad he is on the mend. Purchased your ebook – I hope it helps alleviate that stress. Wishing your family a happy new year!

  13. Meghan Rutherford on

    I’m so sorry you all had to go through this. I started reading your blog when pregnant and my little is just a month or so younger than Wallace. He had a similar fever spike last winter and I have never been so scared. I had never heard of febrile seizures before. You all should 100% do whatever you think is right to keep him as safe as you can, but something to consider to get more airflow in the back is the Noggle — not sure if it would work in the truck, but it might help some!

    So glad he is on the mend – I had already bought the ebook but will spread the word. To have to deal with bills on top of that stress is so awful. <3

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