Our Experience with Febrile Seizures

With this past weekend being the six month mark since Lincoln’s seizure, I wanted to share our story. I apologize if some moments seem overly detailed, while others are lacking, but these are the memories I play over and over again in my head, the ones I wish I could erase, but fail to. If this post helps one person, then it was worth it.

I had no idea what a febrile seizure was six months ago. Now, I’m more aware of fevers than I ever thought I would be, and far more than I would like to be. While I don’t check Lincoln’s temperature each morning, anymore, I still struggle. My triggers; when he is over tired or when he is sick. I know time is the only thing that will allow me to look back at this, and label it, just “another thing that happened,” but I’m not there yet, and I’m not ashamed of that. If you have ever gone through a similar circumstance, I know you understand. And if you haven’t, I envy you.

Thursday March 23, 2017

The day started off as any other; Lincoln woke up at his normal time, was a bit more cuddly and whiney than normal, but I didn’t think anything of it. It had been a busy week, and I just assumed he was over tired. I made him breakfast, {where he ate slightly less than normal, nothing that raised any concern.} He helped me take care of Wyatt, we played in the basement, and watched some Mickey Mouse. It was a typical morning for him.

Lunchtime rolled around, and he told me he was hungry, which I was happy to hear. I sat him in his highchair and made a bowl of cereal, per his request. I knew he was tired, and didn’t want to miss the chance of him eating something, so I was fine with him wanting cereal. Plus, we have cereal as meals all the time in this house. He chowed down the first bowl and demanded more. Toward the end of the second bowl, he was looking extremely tired. {I actually snapped a few pictures and sent them to Jason because I thought he was going to fall asleep in his high chair!} Looking back, I would now describe his behavior, while in the high chair, as lethargic, but in the moment, I truly just thought he was tired. #momguilt.

12:04pm He told me he was done, so I walked over to the sink, grabbed a rag, and quickly ran it under the faucet. As I turned back around, I saw Lincoln, slumped over his tray. I continued to walk over to him, thinking he was playing {fighting being cleaned is a common occurrence around here} but as I got closer to him, I knew something was wrong. I truly don’t remember what I noticed first, his eyes, still open, but unresponsive, or his body, limp, yet convulsing, ever so slightly.

As I screamed for him to look at me, I ripped him out of his chair and laid him on the ground. I’m not sure why I assumed he was having a seizure, or how I even knew what to do, but my brain was throwing out commands, and my body just listened. At some point, before I got him on the ground, I had grabbed my phone and dialed 9-1-1. The dispatcher answered and I proceeded to tell her that I thought my son was having a seizure. This is where it gets blurry for me. I know she asked me why I thought that. I explained that he was unresponsive, and his entire body was convulsing. Phone number, home address, all those details came next, and seemed to take forever. Another dispatcher came onto the phone, and instructed me to get him on the ground. I told him I had already done that, and got him up to speed. I remember him asking if Lincoln had a fever. I responded that to the touch, he seemed to be burning up, but I had not taken his temperature at all that morning. I didn’t understand, yet, why that even mattered.

What he said to me next, I have no idea, because at that moment, Lincoln started to turn blue. I started screaming and begging for him to send help.  I sat there, sobbing, helpless. I truly thought I was watching my son take his last breath. He ended up vomiting, and immediately regained his color. Relief rushed over me, I thought he was going to “wake up.” He made the softest noise, almost like a sigh. Then, he was still. Eyes open, he laid on the ground, still limp and lifeless.  It’s amazing that his eyes were open, because the little boy I was looking at didn’t resemble my wild child in the least. I was afraid to touch him, although I considered picking him up. The ringing that was in my ears stopped, and I realized I was still on the phone with the dispatcher. I told him that he had vomited, regained color, was breathing, although it was slow, very, very slow. The dispatcher told me that an ambulance was on the way, and that he would stay on the phone with me until they arrived.

I recall the man on the phone saying something about putting any animals away, and being prepared to leave for the hospital upon the arrival on the EMT’s. I sprinted for my jacket, grabbed Wyatt, and the diaper bag. {Note, Wyatt was in his pack n’ play up until this point. Crying? I don’t remember.} I sat back down, next to Lincoln, and continued to update the dispatcher, although Lincoln’s condition hadn’t changed. He laid there, breathing slowly, not blinking, not moving.

I saw lights, and told the dispatcher that the ambulance had arrived. I have no idea what was said next, but we hung up and I waited…and waited. I stood up, looked at Lincoln, and decided it was okay to run outside for a second. Pajamas, no bra, holes in my pants, I jumped up and down on my front lawn, waving my arms back and forth trying to get the attention of the ambulance that had passed my house, and was driving down the street. Finally they saw me, and approached the house.

It was like a clown car, I believe there were four EMT’s total, all looking as calm as could be. The lead EMT {at least that’s how I am going to label him} approached me and started asking questions. He asked Lincolns’ name, if he was on any medication, what he had eaten that day, and if he had ever had a seizure before. “His name is Lincoln, no he’s not on any medication, he just had two bowls of cereal, no seizures, healthy as can be, but he broke his femur seven weeks ago, and just got out of a brace.” There is a good chance I screamed that information at him, but he just stared at me, watching my mouth move, as he wrote everything I was saying on his hand. I’m not sure why I remember that so vividly, but I think it’s because it made me feel safe. He kept eye contact the entire time, and whether he did that on every call, it sure made me feel like he sympathized with me. He explained that they were going to take a look at him, assess the situation, and then take him to the hospital. I moved out of the way, and watched as they looked over my little boy. “Hey Lincoln, hey buddy. Can you hear me? Can you look at me.” They started with the medical talk, and the ringing in my ears started again.

The next thing I knew, they started moving. I snapped back, and clearly looked panicked, because that same EMT looked right at me, and said, “It’s ok. We are going to take him into the ambulance now. You can ride with us.” I snatched Wyatt up, swung the diaper bag over my shoulder, and basically sprinted outside, and into the passenger seat of the ambulance.

There I sat. Covered in spit up, I took out my phone, and started to make phone calls. First, was Jason. I don’t remember how many times I called him before moving onto my mom. She didn’t answer the first time, but immediately called back. I said something like, “Lincoln had a seizure. I need you. Please. I need you.” Then, I called Jason’s mom. “Stay calm. Lincoln had a seizure, I need you to come to the hospital,” or something along those lines. Ironic that I was telling her to stay calm, when I was dying on the inside.

I sat there, for what felt like and hour. And that’s when I heard it, music to my ears, Lincoln’s cries. I didn’t know what was going on in the back of that ambulance, but I did know that crying had to be a good sign. An EMT approached the passenger seat, and explained that I couldn’t drive with them because of Wyatt. I didn’t even think twice, or protest at all. I got out, stood on the lawn, and watched them drive away. I ran into the house, put Wyatt in his car seat, and made way for the hospital.

In the car, my phone rang. It was Jason. I answered, and all he said was, “What happened.” {I suppose the 24 missed calls screamed, “emergency!”} I started sobbing, while trying to explain all that had happened, but didn’t have the words. Jason was calm, and quiet. He asked a bunch of questions, ones I didn’t have the answers to. I remember telling him that I just thought he was tired. That I didn’t know something was wrong, that I shouldn’t have been taking pictures of him. We just went back and forth with trying to figure out why this was happening. He told me to call him once I spoke with a doctor, and we hung up.

I arrived at the hospital just minutes later. I parked, and ran as fast as I could into, the ER entrance. As soon as I stepped inside, the woman behind the desk buzzed me back, and said “straight down the hallway sweetie.” But I didn’t need her directions, I could hear Lincoln screaming, and asking for me. I entered his room, set Wyatt down, and walked up to the bed. There he was. Wide awake. Screaming “momma,” pushing the nurses hands away. He was miserable, and I was overjoyed. He was awake, he was alive, he was alert. I sat with him, holding him, telling him everything was going to be okay. It was my job to let him know that he didn’t need to be scared, even if I was crumbling on the inside.

I remember, as the nurses were attempting to get an IV started, I couldn’t physically pin Lincoln down any longer, I had to let them take over. I walked over to my mom, and lost it. I started sobbing, clinging on to her, just as Lincoln had been clinging onto me. I cried in her ear, “Why is this happening to us?” She gently rubbed my hair, and told me she didn’t know. She was fighting back tears, but they were winning. She held me until I pulled away.

I’m not sure when the doctor showed up, I just remember crying to her and begging her to give me answers to the dozens of questions I had rolling around in my head. Why did this happen? Is he going to be okay? Could he have another seizure? Could this have caused neurological damage? She stood across from me, listening to every word. She nodded with each question I asked, letting me know she was on the same page. When I finally stopped for a breath, she began talking. She told me that Lincoln had suffered a febrile seizure. They happen to kids ranging in age from about 6 months to 5 years. They are not dangerous, and they don’t truly know why they happen. The easiest way to justify them? A quick spike in fever. There is no way to prevent them. There is no way to know if a child is going to have one. And, because Lincoln had had one, he now had a 20% higher chance of having another one, but that he also may never have another one again. I did my best to retain as much information as I could, but I was so confused, and still terrified.

Once Jason showed up, the doctor repeated everything she had already told me, at least three more times. She never rushed, she never seemed bothered. She understood we were trying to understand what had just happened, and seemed happy to run through the facts; over and over again. They tested Lincoln for everything; RSV, strep, UTI. You name it, they tested for it. After everything came back negative, a virus was named the culprit. A stupid virus. After spending a long five hours in the hospital, and were discharged with simple instructions; Tylenol, Motrin, and rest. We made it home, and the journey to normalcy began.

And now, here were are. Six months later, and he’s still only ever had that one seizure. May not seem like that big of a deal to some people, but to me, it’s everything. I have not responded well to people’s “sympathies.” All the, “he will be fine, even if he does have another one,” or “they’re not dangerous, so that’s good.” Yeah. That’s great. I dare you to tell me those things after watching your child have one. I’m bitter to say the least. Believe it or not, I’m better than I was a few months ago. I’ll be even better a few months from now. I’ll probably tell ya about it…

 

7 thoughts on “Our Experience with Febrile Seizures”

  1. Caitlin this was hard for me to read as I’ve experienced this scenario way too many times. There are still days where I think “why is this happening to us”? Hang in there, you are one strong momma!! Love you!!!

    Liked by 1 person

  2. March 17, 3017
    2:42am
    I woke up with my 2 year old son in bed with me ( my son wasn’t feeling great, so my husband slept in the guest room that night) having what I would find out to be a febrile seizure.
    The scariest moments of my life.

    Liked by 1 person

    1. First of all, I am SO sorry I am just seeing this comment now. Second of all, HOLY CRAP so scary! I can’t imagine being woken up by one! Has your son had anymore? Lincoln just had his second one a few weeks ago-in his sleep. Goshhh I hate these stupid things. 😦

      Like

  3. This brought back so many terrible memories of that day- and I didn’t even see it happen. It breaks my heart that you and Lincoln had to go through that. I can’t even imagine how terrified you were, I wish I could take those terrible memories away from you. I pray that in time the pain you feel remembering that day lessens. You are so amazing , in spite of what you were going through you did just what needed to be done to keep our little boy safe- you’re so strong. I say this all the time, but I mean it from the bottom of my heart- you are the best mommy ever, and Lincoln and Wyatt are blessed to have you – we all are.

    Liked by 2 people

  4. Your story is so similar to ours. Our little boy had his first, and so far, only febrile seizure December 9,2017. I remember every detail. Besides the ones right in the moment. I was screaming at the 911 operator to get the ambulance here faster. I think I quit breathing for a bit of time and I was actually 4 months pregnant at the time. I just knew I had possibly lost my unborn child in that moment. I ran to the top of our driveway too waving and screaming for the ambulance to arrive when they were on our street but at the bottom of the hill. It felt like an eternity watching them drive towards me. And I am with you on the words of sympathy from others. No one will ever know what the experience is like and I hope most never do. I found myself bawling while reading this story. And ironically our little guy has been running a high fever all weekend. Our anxiety’s have been very high, to say the least!!!!! He sleeps in his pack n play in our room any time he has fever. He is 31 months now and we have a 3 month old. I have the worst fear that we will see one of these again and I hate that fear!!

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    1. Oh my heart aches for you! It was the scariest moment of my life. I’m so happy to say we’ve been seizure free for (almost) a year. We had a checkup with our neurologist this morning & she’s happy with where we are at. Prayers for you guys & I hope your little guy is feeling better sooner than later!!

      Like

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