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Febrile Seizures: I wish I knew then what I know now

Becoming a mom of two has its challenges:

  1. There’s no sleeping when the baby sleeps because you have a preschooler to entertain.
  2. You struggle with whether your eldest is getting enough one-on-one attention from you.
  3. Personal time and space is pretty much non-existent at this point and you’re lucky if you find a minute to yourself while you’re using the bathroom! {He literally will knock on the door to ask me for help even if his dad is right next to him! 😉 }

That being said, there’s also several advantages, the biggest one being experience. As a second-time mom, I’m aware of the differences that are present in my ability to “mom” this time around. For obvious reasons, I’m less anxious, more prepared, and I feel as though there’s not much that can catch me by surprise.

The same can’t be said when we’re first time parents. You try your hardest to prepare for it all, but how can you possibly prepare for the unknown? Still, you read all the books on what to expect and research every corner of the internet until your little heart is content! I remember feeling prepared (naïvely) for all of that was to come – diaper blow outs, breastfeeding, transitioning baby to his crib, and so on! What I wasn’t prepared for was the moment when I would be holding my 20-month old son in my arms as he had his first febrile seizure.

Ready to set sail!

My 28th birthday is one that I will never forget. We were just about to set sail on Poppa and Grandma’s boat for our week-long trip to Block Island. It was going to be a great week with both sets of grandparents! It was a gorgeous day to be out on the water and we were all looking forward to the week ahead. Just before we were about to leave, I noticed that Noah felt a little warm. My husband (Lou) ran out to the pharmacy and picked up some Children’s Tylenol for the trip. We gave Noah the recommended dosage and prayed that the fever would be short-lived.

When we arrived to the island we all made our way up to the restaurant for a bite to eat. Noah felt a little warmer than usual. I remember thinking this was likely caused by the sweltering heat that day. He was extra clingy but I knew he wasn’t feeling well and so extra snuggles and comfort were just what he needed. Just as the food was coming out I felt Noah begin to twitch. I thought it was a little odd but I chalked it up to him being tired. We decided we would get our lunch to go and just go back down to the boat and give him another dose of Tylenol and let him rest.

We took his temp – 102.4. I don’t have that number written down anywhere but it’s forever ingrained in my memory. We gave him some Tylenol and daddy and Noah laid down on the couch for some rest. I ran back up to the restaurant to get our food and when I came back Noah popped up his little head and said he wanted to lay on mommy. So we switched off and I took my son and held him on me chest to chest.

Just before he had the seizure

I remember first feeling his heart racing and then I heard what I can only describe as a clicking noise coming from his mouth. I called to Lou and asked him to look at Noah and tell me what was going on since I couldn’t see his little face because of the way he was laying on me. What he saw was our little boy having a seizure. His eyes were hazy, his stare was blank and he was drooling. I remember moving him so that I could look at him myself and I began asking him questions. “Noah baby, are you ok?” Nothing. “Noah, I need you to say mommy, can you say mommy baby?” Still nothing. My son was just staring at me blankly and totally unresponsive. The ever so energetic and talkative little boy was now still and silent. At that point I felt like my heart was exploding out of my chest. What was happening to my little boy?

My husband, who thankfully minutes before had been googling ‘twitching and fevers in toddlers’ said “I think he’s having a seizure because of his fever.” Not that his explanation brought me any peace, but at least I had a clue as to what was happening. Lou ran out of the boat and called to his father who was two boats down visiting with a friend. A woman on a nearby boat heard my husband and asked if we needed some help as she is a nurse. Thank God for always providing the right people at the right time. She told us that she thought he was having a febrile seizure. She could have easily been talking another language as far as I was concerned. I had never heard of such a thing but because she was calm, I stayed calm.

We called 9-1-1 and the three of us hopped into the ambulance to rush my son to the only small clinic on the island. We grabbed nothing. As a matter of fact, I remember telling my husband to quickly run back to the boat and grab diapers and wipes. That was all I could think of.

When we reached the doctors they explained to us that our son was in fact having a febrile seizure. The only thing I heard and understood was the word seizure. What do you mean he’s having a seizure? Like an epileptic seizure? Will there be permanent damage from this? What will his life look like after this? I remember all of these thoughts entering my head all at once. In short, febrile seizures are convulsions that happen when a child’s fever spikes too quickly. So, even though Noah’s fever of 102.4 wasn’t extremely high, it had to do with his temp rising at a fast pace.

At the clinic they hooked my son up to a machine to monitor his heart rate. His heart was still racing a mile a minute. They tried everything to bring it down. They took cloths soaked in freezing cold water and applied it to him to try to shock him so as to cause the heart rate to stabilize. Nothing was working and my poor child was in my arms looking at me trying desperately to understand what was happening. There’s nothing worse than the feeling of hopelessness that comes over you when you can’t help your child.

Blurry, but the only picture I have of us in the hospital

The small airplane we took back to the mainland

The doctors were concerned that because his heart rate wasn’t slowing down that he could have a heart condition. They didn’t feel comfortable treating him because he wasn’t a known patient and they didn’t really have the necessary equipment to do so. At that point we had two options: 1. wait it out and hope for the best or 2. be airlifted to the closest hospital at our own expense. And so we made the only decision that made sense; within 10 minutes we were at the airport booking our tickets to the mainland. We had been there less than 2 hours and we were already headed back.

I won’t bore you with the lengthy details, but thankfully everything turned out ok. Noah doesn’t have a heart condition and his heart rate stabilized shortly after we arrived to the hospital. That being said, it was the scariest day of my life! I thought I was prepared for it all. I had read about cradle cap, baby acne, Mongolian spots, you name it. But where was the warning about febrile seizures? How come no one told me that there could come a time when my son could be absolutely fine one minute and within the next he could be laying in my arms unresponsive?

The photo above was taken once we were already at the children’s hospital and right after he had eaten TWO popsicles! You’ll see my big boy in an oversized t-shirt and a smile on his face. They drenched his clothes at the clinic and we literally jumped on the first available plane with nothing but the clothes on our backs, Lou’s wallet, and a few diapers and a package of wipes. The shirt was an extra shirt that one of the ambulance drivers gave to us to put on him. I still have that shirt packed away in one of the bins filled with clothes that no longer fit Noah.

Our day ended with family having to drive an hour to the hospital to take my husband to buy a car seat because the hospital wouldn’t discharge us until we had one, and us renting a hotel room nearby so that we could take the plane back to Block Island to meet back up with our parents (who unfortunately had to stay behind). To say it was an adventurous twenty-four hours is a HUGE understatement. But it’s ok. Because everything turned out ok and we have a healthy little boy and an adventure to share with him. I remember joking with him a few days later when we realized that we literally took every form of transportation during that vacation; a boat, a train, an airplane, an ambulance, a taxi, a ferry…you get it!

He’s had one other seizure since then. Even though we knew what to expect, it wasn’t any easier to deal with. It still scared the living daylights out of me. I’m not sure why there isn’t more information out there on febrile seizures. It seems to me like it should be something that your pediatrician mentions at one of the 50 million well visits we all have to go to during that first year. I know they are totally harmless and there are no lasting effects, but none of that matters while you’re going through it. Children between the ages of 6 months and 5 years old are most likely to experience these seizures, so we still aren’t out of the woods yet with Noah. Every time he gets a fever we both get anxious and we put him in bed with us. It’s the only way I feel some semblance of peace.

I like to look for the positive in situations such as this. The one good thing I can take from this experience is awareness. I now know what a febrile seizure is and I’m prepared whenever Noah gets a fever and I’ll do the same now for Ryan. I ventured out into blogging about motherhood because I wanted to share my experiences and stories in hopes that other moms could relate to and learn from them.

I’ll leave you with this adorable picture of my little sailor enjoying the rest of his vacation.

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Comments

  1. Oh my gosh, this sounds like such a traumatic experience. I’m so sorry that this happened, but I’m glad your little boy is okay. Sending love from Toronto!

    • Thank you so much! Definitely a traumatic experience but one I wanted to share to make others aware. ❤

  2. “I look for the positive in situations like this” I love this outlook! And thank God for the nurse who helped you prior to getting to the hospital. Much to be grateful for!!

    • ❤❤ Definitely much to be grateful for! A positive outlook is sometimes harder to have but always brings purpose and understanding for you to apply in the future.

  3. Very scary situation indeed! It’s good to share your experiences so if others experience this, it might help them. I’m so glad it all turned out well!

  4. My daughter went through having these as well. It was one of the most terrifying experiences I have ever been been in. Thankfully they grow out of them and we are now part of this veteran group of moms who can be there for the next mom who has to go through this.

    • Glad to hear she’s outgrown them! I’m hoping that Noah has too and that we can avoid them with Ryan. And yes, I’m glad to be a part of this veteran group of moms <3

  5. It’s so scary when our little ones find themselves in trouble. I have a couple of mom friends who have dealt with febrile seizures and it really took them by surprise too.

    • It’s such a horrible feeling knowing they’re going through something that you can’t control. Hoping we’ve seen the last of these.

  6. Hugs to you! We’ve gone through this with both of my boys and the first one with my oldest son was hands down the scariest experience of my life. I blogged about it too – because I agree with you that people need more info about these and I think the personal stories stick with people better – and my heart was pounding and I had tears streaming down my face just reliving that day. I’m glad all is well with your son!

    • Thank you so much for your kind words. It really is an ordeal to go through and unlike anything I’ve ever experienced! I’m glad you shared your experience too. <3

  7. I’m so glad everything worked out okay in the end! What a scary 24 hours. I agree, I wish doctors would talk a little more about febrile seizures; I feel like they’re a little more common than we think.

    • Exactly! All of the Doctors we saw spoke so commonly as if it was no big deal, which in retrospect I guess it’s not since there are no lasting effects. But if it’s so common, why don’t we talk about it more. The more people know about it the better!

  8. As a mom, I had knots in my stomach reading this post. Nothing is scarier than not knowing if your baby is okay. I’m so glad it turned out fine, and it’s great that you’re raising awareness.

    • Thank you so much for reading! I definitely hope to get awareness out there. I know it’s not a life or death situation, but when you’re going through it, you sure do feel like it! Had I known that this could possibly happen it may not have been so traumatizing.

  9. How scary! I am glad little little Noah is okay. God definitely put the right people in place at the right time for you. Bless you and your family!

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