Our Son's Febrile Seizure

Our youngest son had a febrile seizure in December of 2022. I shared a little bit about it back when it happened. But as one who is forever documenting things, I wanted to share the whole story here. One, to look back on and, two, to share and educate on this very common occurrence in young children.

A febrile seizure is a seizure that it triggered by a high temperature. It usually is harmless but nonetheless, very alarming for a parent. At the time, our son was one and a half years old and I was pregnant with our fourth. Here is our story:

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Our little guy gave us quite a scare. Yesterday when we got home from school (around lunch), I went to get him out of the car and he was having a seizure. He was shaking, he wouldn’t make eye contact with me, and he was foaming at the mouth. 

I didn’t know what to do so I got him out of the seat and called 911. As I was on the phone he stopped seizing and his eyes closed. They told me to go inside, undress him, and lie him on his side. He was breathing but his eyes remained closed. 

They hung up with me and told me paramedics were on their way. I couldn't believe they were going to leave me alone with him in this condition. So I called my neighbor to come get the other two kids. Then I called Brent. 

After that I sat there helplessly with him asking him to keep breathing and praying he would be okay. I watched his every breath, rubbed his sweet little head, and begged God to keep him alive.

The paramedics arrived and after checking him out, they said he was okay. 

I was relieved to see a familiar face - the nice paramedic who came to see me when I had an anxiety attack was here again. She was just as kind and reassuring. I will forever remember her care.

They said that seizures are exhausting so he was reacting normal to be so tired. He seemed like he was sleeping.

Brent arrives flustered, panicked, and with tears in his eyes. He said he drove so fast he turned his 15 minute commute into 5 minutes. But our boy was okay.

We gathered our things and I went with him in the ambulance. He started to perk up, playing with the blanket. We then get to the emergency room. 

He continued to show symptoms of the seizure - he couldn’t move his eyes to the left and he seemed to lack control in his left arm. His temperature was 104. So they gave him medicine to get his temperature down. He continued to have a fever and showed concerning behavior. They determined he was having a febrile seizure but because he wasn’t showing movement to the left with his eyes, they wanted to make sure it wasn’t something more. 

Things started to slowly improve and he started showing control of his left side. But they still were concerned that it lasted longer than what’s usual with this type of seizure. So they transferred us to Seattle’s Children’s Hospital. 

So that meant another ambulance ride for me and him. This time through traffic hour in Seattle. It was a very long ride. Brent went home to get the kids from the neighbor, feed them dinner, and then get them off to bed. A work friend came over to be at the house with the kids. 

Meanwhile, we arrived to Children’s Hospital and got settled. We see more doctors then we wait to see a neurologist. 

He finally seems to be doing better. He wants to jump on the hospital bed! I’m feeling relieved he’s feeling better but my exhaustion finally sets in and the adrenaline dies down. Trying to entertain a 20 month old hooked up to a hospital bed is not easy! 

We finally see a neurologist and Brent is back. After much discussion, they feel like he is looking back to normal. Instead of imaging tonight, they decide he is okay to go home and that we can follow up in clinic for testing, just to be sure there aren’t further issues. 

We feel reassured this was likely caused by his fever and being sick (he tested positive to two strains of colds). We finally head home about 10 pm. We keep an eye out on him throughout the night, not getting much sleep. Brent brings him to our bed and he wants to play and babble! We eventually decide it's best to get him back to his own bed. 

The next morning he still has a fever. But with some medicine, he seems back to his old self and is playing again. So we continue to monitor his temperature and keep an eye on him. The chances of him having another seizure isn’t high. And another one in the next few days, even less. So we hope our little guy will be feeling better soon. 

My night time pregnancy nausea hit once we were on the way home. It usually comes much earlier in the evening but I was so pumped up on adrenaline. It’s amazing how our bodies react in these situations. I’m grateful to have been able to hold it together. 

A day later, I finally cried typing this all out. I’m so grateful my baby is okay. 

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Over the next few days I continued to replay the whole scenario over in mind, especially lying in bed at night. It was all quite traumatizing and hard for me to not dwell on. 

A couple weeks later we went to see a neurologist to get an EEG, that measures electrical activity in the brain, to test if he had any other signs of potential seizures. He would have to be asleep during the procedure so we had to keep him up late the night before and wake him up early so that he had three less hours of sleep. Luckily the appointment was also scheduled around his nap time. We just had to make sure we kept him awake for our 30 minute drive to Seattle. Only one parent was allowed so I went by myself while Brent took care of the other kids. 

I was pretty nervous and emotional about taking him to the appointment by myself. On Christmas day he had a really bad diaper rash and was inconsolable. The way he was acting scared me and I just started crying! Emotions were still pretty high and I was just hoping I would be able to pull it together for the appointment.

We went to the EEG and survived! There was lots of crying as they placed the metal discs on his head. But he did eventually fall asleep for the test. 

crazy hair after the test

The next day we went back to Children's Hospital to go over his test results. Thankfully everything was normal so there was no need to come back unless he was to have another seizure.

In the weeks and months to follow, I continued hearing more stories from friends about their child's febrile seizure. I was surprised that it was so common and that I had never heard about it. I teared up when I would tell people the story and it took quite some time for me to move past it.

Now whenever a child is showing signs of illness, we run to our thermometer to check their temperature. The likelihood of this happening to one of our children again is low. But the fear and worry sticks with you.

A friend of mine so kindly told me - " Just because it's common doesn't mean it takes away the trauma."

We are so grateful our children are all healthy and their normal rambunctious selves! There is nothing as scary as the danger or your child. But I am so thankful he is okay and for all the wonderful medical professionals who walked alongside us. I still haven't seen my wonderful paramedic around town again. But I held on to a thank you card for her for about six months before I threw it away! I hope one day to see her again and thank her for her service to our community. (*Update: as I shared a few posts ago, I did finally end up running into her and saying thank you! It meant so much to finally connect with her.)