Let's Talk About Febrile Seizures
Posted on November 30 2016
I don’t like to put my incredibly personal life on the internet but if doing so can help just one person, especially a child or a parent, then I do. So here goes:
My son Benjamin (who recently turned 2) just experienced his fourth febrile seizure the day before Thanksgiving while we were visiting friends at their home in New Jersey. When we arrived, Ben was fine. Like a normal toddler, he was running around and screaming. Next, he was banging on a drum. Then, he seemed to run out of gas, asked us to hold him, and within the next 10 minutes he developed a fever that wouldn’t stop rising and before we could even prepare for it, he began to seize.
As you can imagine, it sucked. And it was scary. And as a parent, it highlights one of the worst aspects of parenting: a moment when you want to help your child but you are useless. Being useless is not a state of being that I am comfortable with so every time Ben has a seizure, I use it as an opportunity to raise awareness about what to do in case you are ever in the presence of someone who is seizing:
1. Lay the person flat on the floor and secure their being (ie, make sure nothing is near that can harm them or their head)
2. Call 911
3. Turn them to their side if they are foaming at the mouth, vomiting, or drooling
Most importantly do not put anything in their mouths and do not try to restrain them.
Got that? It’s the basics. If you should be in the midst of this emergency and you can fathom one more step, here goes: time the seizure.
The first time Ben had a seizure one of the first questions everyone (ie, doctors and EMS) asked was, “How long was the seizure?” You know what? I have no idea. It was probably about 3 minutes but it felt like an eternity. The first time Ben seized it was December 17, 2012 and I told myself that that was one of the worst days of my life. He was only 13 months old and up until then, very commonly, I thought, “This could never happen to me.”
The whole episode started with a fever on a Sunday night. My hubs and I gave Ben Tylenol and then we battled the fever on and off throughout the night. In the morning, around 10a, Ben awoke and he had a fever still. I promptly gave him more Tylenol, took him downstairs, and would normally have gotten us some breakfast. But we didn’t do that that morning. To be quite honest, I am convinced we were surrounded by angels who orchestrated the whole horrible experience because it was by the grace of God that I decided, “You know what? Breakfast can wait a little. Let’s just sit on the couch and watch some tv.” If you don’t know me, you have to know: I rarely watch tv. I just don’t. I like the quiet. I like the calm. But I sat down, turned on Ellen, tried to talk to Ben about what we were seeing and before I could even process what was going on around me, he started shaking uncontrollably in my arms while his eyes rolled to the back of his head.
To be honest, I don’t even know how I knew he was seizing. I had never seen a seizure before and knew of no one that had seizures like this. But I looked down and without blinking I thought, “Oh my God. He is seizing.”
Further proof in my mind that angels do exist, the land-line telephone was directly to my right on the couch (Ben was seated in my arm nook to the left). I did not make any phone calls that morning and never leave the phone off the hook (the battery can die!) but somehow the phone was there. I called 911 and as-calm-as-possible declared, “[My address] and PLEASE COME QUICK MY BABY IS SEIZING.” The rest is generally blank. I don’t really know how long Ben seized that morning: Like I mentioned above – 3 minutes? Maybe 4? They asked me, but all I could remember is that he shaked while I cried and then he passed out and I thought, “Ohmygod I am going to have to do CPR on my baby.” Thankfully the moment Ben went completely limp, I glanced out the window and saw 911 coming up the steps to my house.
The second time Ben seized, I can’t even tell you about it. It was February. And all I remember is, “OH NO, NOT AGAIN.” My husband was with us this time and I’m convinced I blacked out the whole experience because I thought, “If I can’t remember, then maybe it just didn’t happen.”
After the second time Ben seized though, we took him to a neurologist to rule out seizure disorders. Our pediatrician said what he had was probably febrile since there was a fever present every time, but of course, a little second opinion never hurt. Can I tell you about the neurology visit? Barely. All I can remember is the following: 1. Two different neurologists agreed Ben’s seizures were febrile, 2. One doctor told us that some people don’t call 911 until someone has been seizing for at least 10 minutes, 3. Seizures put respiratory distress on the person who is seizing and 4. The other doctor, even against the advice of the first, gave us a prescription for anti-seizure medicine. At this point in time, I started to think to myself that we (my hubs and I) better have a plan for future seizures but after all the differing advice and information, the only thing we could agree on was this: CALL 911.
The third time Ben seized it was May 25, 2013. Yes – only a few months earlier this year. I had prayed that with the season’s change Ben would have grown out of his febrile seizures, but I was wrong. I can’t remember the exact time of day but it was night time and Ben had a fever so I was on ridiculously high alert. I was a crazed Mother taking her child’s temperature nearly every 10 minutes praying, “Please go down. Please go down.” I refused to put Ben to bed having learned from research and talking to so many professionals that most children with febrile seizures seize in their cribs by themselves at night, with no one even knowing. I was rocking Ben in my arms until he fell asleep (even though I planned to hold him through the night!) but in one moment he was looking at me and in the next, his eyes went to the back of his head and the gentle shaking commenced. I called my husband, “Andrew! Come!” When he didn’t appear 2 seconds later, a little more loudly I shrieked, “Andrew!” The truth of the matter is that even to this day I have no idea if Ben can see us or not when he is seizing (though I am trying to find out!) but I am convinced that sometimes he can and sometimes he can’t and in that second moment of yelling, I believe I saw him get a little scared look in his eye. I will never forgive myself for that. The last thing I ever wanted to do was scare him when I think he was already scared. Andrew came and we lied Ben on the floor. I ran to call 911 and grab my phone for a timer. Before I made it out of his room, I ran into the wall like a chicken without a head. I just could not believe this was happening again. Andrew told me to calm down. I was too frantic during that episode. The fear that I had caused Ben momentarily replayed in my mind and over-rode my brain’s ability to perform the plan we had formed for seizures. But alas, I stumbled my way to a phone and only a few minutes later, 911 arrived. We went to the hospital as usual and I commenced my praying, “Dear God I’ll do anything – Please don’t let this happen again!”
At this point dear reader friends, I’m going to admit I have been foolishly in denial that we were done with seizures. Having almost made it through the end of the year without another episode, I secretly thought my wish had been granted. I thought, “He’s 2! We’re done!” I have been such a fool. In fact, I have been so indulgent that this time around, I learned an even greater lesson: Ben has febrile seizures and they can happen anywhere. That sounds stupid but the truth is I always envisioned that if he did have another seizure, it would be like the rest – in the comfort of our own home after an hour or two of battling a low-grade fever. And in the past, I believed each to be a fluke (still!). I’m trying to accept the terms of his little body (they are not flukes, Ben HAS febrile seizures) but the truth of the matter is it doesn’t get any easier with time.
This last time Ben seized, it has been the worst for me. Not only because it lasted approx 6 minutes, but because I am back to feeling useless and I know too much. I know kids can seize for upwards of 10 minutes. I know they have limited oxygen while they are seizing. I know my baby is undergoing something I would never want for him and I know there is nothing I can do. But as you can suspect that last aspect doesn’t work for me. So this time around, I’m sharing the full story not only in the hopes of raising awareness about what to do, but also in the hopes of potentially comforting another Mother who has just experienced her first febrile seizure (and who – unfortunately – may be on this same path of more to come).
This last time Ben seized, he was fine all day. There was no fever. No lethargy. We went to our friends’ house for dinner and he was running around and screaming like a normal 2 year old. Around 7p when we would normally start getting ready for bed, he came up to me and my husband and he wanted us to hold him. We presumed he was tired so we asked our friends if we could just put some Barneyon so he could chill out. They agreed. We put the TV on and I propped Ben on the couch, but he didn’t want to be alone. He whined to sit on a lap so my husband went and sat with him. Ben started to look really tired; like he was going to fall asleep. My husband was brushing his hair and feeling his forehead. I mouthed across the room, “Fever?” My hubs shrugged, “Maybe?” We both sat for a few more minutes trying to enjoy the company of our friends. I continued to talk with my girlfriend and I kept glancing over at my boys. Ben was looking a little more weak. I asked my friend if they had any Tylenol or Ibuprofen in the house. For an instant I thought, “Can I throw my child in your tub?” but I never said it. Or did it. I just kept looking at Ben thinking, “No. No. No. Please. No.” My girlfriend went and got the Tylenol and Ibuprofen. She set it on the table in front of me. Then I looked back over and Ben’s eyes were rolling in the back of his head. My husband could tell from the shaking but I ran over and declared, “He’s seizing.” I grabbed my phone to start the timer and asked my friend, “Please call 911.” We laid Ben down on the ground and I started to take his pants off. He was so hot. I know my husband thought I was acting frantic again (and maybe I was) but the 911 operator also told us to take off his clothes. I also wanted to run and grab wet towels to put on his forehead. But I didn’t. I still hate the fact that I didn’t.
Ben’s body shaked while he laid flat and almost naked on the floor. I held his right hand. I rubbed it against my face and said, “Hi buddy. Mama and Dada are here. Don’t be afraid. You are going to be okay.” I kissed his hands. I stared in his eyes. A single tear appeared out of his right eye. Was it a bodily reaction? Was it him crying? I’ll never know. But it pains me. The 911 operator, on speaker phone, gave us a play by play of where our help was and asked us if he was still breathing. At this point he was but it was very shallow. And his lips were purple. And then gradually a circle of purple moved from his lips to his face. “Hi Ben. Hi” I said, all the while informing the woman on the phone, “Labored breathing! Labored breathing!” I’d be lying if I didn’t say I was scared. This seizure seemed to be going on forever and that was the most purple he had ever been. To be honest I couldn’t even tell if his chest was rising and falling and I didn’t like it. Little bubbles started to come out of his mouth so we turned him to his side. 911 asked again if he was still breathing. “Barely.” I watched his little stomach move in and out and thought, “Keep breathing! Keep breathing!” 911 told us the ambulance was somewhere supposedly close and asked if we would be okay hanging up. I told her no. I wasn’t ready to let go of life lines. Ben stopped shaking. He had brief moments of clarity where he was looking at us. Then he was not. He whined a little. He was limp. Then he closed his eyes. My husband and I still debate about whether or not he seized for a little more. After this grand episode, my hubs swept him up and held him. I could have sworn his eyes rolled back some more and he was getting ready to shake again but local EMT was now on the scene and they told us to lie him down, so we did. The rest is medical intervention.
To be honest, I don’t exactly know why I feel compelled to share this episode. For the shock factor? Because I want you to be shocked? Maybe. But more importantly, I guess, I want you to be prepared for the shock. I was not. And this time around I learned the hard way that this could happen anywhere. And it could happen to anyone. And I would like for everyone to know not only what a seizure looks and feels like, but please, oh please, know what to do.
For more information re febrile seizures, please see here https://medlineplus.gov/ency/article/000980.htm
Also, after our neurologist appointment, I found myself hip deep in researching epilepsy. The one take-away I had from all the reading I did is that there are excellent children’s books out there on the subject matter. I still pray Ben will outgrow his seizures long before I need to purchase one, but if not, I do feel a small sense of comfort knowing that the resources are out there. I really wish I could know if he feels funny before the seizure happens. Or what he feels/experiences while he is seizing. But if I can never find out at the expense of him never seizing again, I’m more than okay with that too.
Finally – if you are the Mother of a child who seizes and you need support, please contact me. If you live in Pittsburgh, I’d be more than happy to meet you for coffee so we can cry together and shake our fists at the sky.
PS – this is Ben after his first seizure. Since my husband wasn’t with us, I took this picture for him. I couldn’t look at it for a long time without being sick and I considered deleting it many times. Who would need a reminder of this? It turns out, I think, me.