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May 8, 2008
Febrile Seizures
So 2am Tuesday morning found us waiting on an ambulance after experiencing a febrile seizure with Julia. As the week has gone on and I have shared this experience with friends most have said they have either never heard of them or wouldn't know what to do during one. I wanted to give a very real account of what the experience was like for us; one to help me get past this horrifying experience and two on the chance that someone might read it or discuss it with someone and know what to expect if they have to unfortunately experience one with their child.
My nieces have each had febrile seizures (it runs in the family) the most recent of which was this past Dec, so my sisters description was with me while I was holding Julia and I think that provided me with some sense of sanity. The little knowledge that I had kept me from going crazy.
Let me preface this account by saying febrile seizures are completely harmless most of the time and my goal is not to strike fear into the hearts of other mothers. I myself am currently trying not to live in fear. 1 in 25 children experience them ranging from ages 6 months to 5yrs. The older you are when you have your first one the less likely you are to have another one, so the likelihood of it happening again to Julia is extremely low. This fact has not kept me from going into her room every night just about every two hours to feel her head though. I'm hoping and praying for the paranoia to fade.
So Sunday afternoon Julia was developing a pretty good cough. Every cold she gets usually is in her chest and coughing for her is nothing new. Monday her breathing sounded labored to me and the cough was worse (we found out later she had croup). About 1:30 that night we woke up to coughing and Lizzie calling to us since Julia had just thrown up. I went in there and she was burning up. We have seen temps of 103 and 104 in our kids so her radiating heat was not shocking and I estimated her temp at nearly 103. I was using the touch method. She washed off in the tub and we gave her motrin and put her back down. I was concerned about how hot she was and was going to go back in after the 3am feeding to feel her. But at 2am we woke to more coughing and she had thrown up again. Still burning up and wanting to rinse off again so I decided she should have a tepid bath to lower the temp which she hated of course. I got her to lay back in the little amount of water that was in the tub to rinse her hair. She was looking at me and seemed like a blank stare and I started to say her name and she was staring at the ceiling and jerking ever so slightly. I pulled her up by her shoulders and said her name over and over. I got her out of the tub and onto my lap and Andy came to the door of the bathroom and I told him to call an ambulance. I held her there on the floor of the bathroom alternating between calling her name and crying out to Jesus. The experience for me was indescribable. She was shaking and her eyes seemed to be moving all around and her lips were turning blue and other parts of her face were blue. I held her head to the side and continued to wipe the saliva from the side of her mouth and inside I was on the verge of losing it. I did have thoughts of my sister though and I remember she told me when she held Isabelle during one of her seizures she thought- so this is what its like to hold your child while they're dying and there's nothing you can do. Even though I had that thought there was another part of my brain which remembered, ok Isabelle's lips turned blue too and she pulled out of it. So it was all these quick thoughts at once. I was pretty sure it was a febrile seizure but still terrified. I think it probably lasted about 30sec-1min and then she went completely limp and peed all over me. This too didn't really surprise me and again it was like I had a check list in my mind from my sister's experience knowing that now we were in the stage where she would be unresponsive. Seizures zap them of all energy and it seemed like she essentially passed out. I handed her off to Andy to get dressed for the hospital and he put a diaper on her and held her on the couch. Her skin was very pale and her lips had no color but she was breathing and I thought well we're breathing so that's a good sign. We considered just driving to tc thompson ourselves as we got a bit anxious waiting but decided not to. We were unable to wake a friend to come over to be with the girls and didn't want to push the issue so I went alone to the hospital (that was not a guilt trip!!! LOL). Although I did get the third degree from several friends for not trying harder and I so appreciate our community of friends. I told Andy when I left that if they did invasive testing for whatever reason I was going to call him and we were going to start waking everyone we knew! We were both ok with this arrangement. By the time the paramedics got there she would get eye contact again and cried when I put her on the stretcher and one paramedic commented that a crying baby was a happy baby to him.
The hospital itself was fairly uneventful, they didn't even do blood work. Although the paramedic did an iv in the moving ambulance which made me very nervous and I said, "you're doing that HERE!?!?" but that was probably the worst for her. She was diagnosed with croup and febrile seizure. Apparently they are very common and not alarming unless a child seizes for over 10 minutes, YES 10 MINUTES!!! I would have freaked then. But the reality is that the seizure is the body's way of protecting itself which seems so strange to me because visually it looks like anything but harmless!!
We were home by 5am that morning and Julia had fallen asleep in the ER finally after a popsicle and playing with my cell phone taking pictures of the room. The Dr was surprised I was handling it so well but he didn't know that every time he left the room I cried and I just laid in her bed with her and cried. I do think though that once again hearing my sister's account helped immensely.
For at least that first day I cried when I walked by the bathroom and could play it back in my mind and I had a hard time sleeping. She has had a fever each night and while I know the likelihood of a repeat is slim to none I can't help but be so anxious. I keep seeing these blue lips and vacant eyes. Not trying to be melodramatic just saying its taking time to get over that minute of my life.
Things feel like they are slowly returning to normal, I mean mostly inside my head. Because the next day for her it was like nothing happened. She still has a cold but is also still fighting with her sister and acting her crazy Julia self.
It's so strange. I told Andy that the more time that passes and the more I talk to our dr or read about it the sillier I feel since its so "normal". But it didn't feel that way when it happened and I feel like we are still dealing with it.
It's not even recommended to call an ambulance when it happens. Calling your Dr office to let them know it happened is enough, unless it last for several minutes then you are supposed to seek medical care. My sister said she doesn't care what they say she calls the ambulance everytime, I think I would be the same way. I was also talking to a friend of mine who is a nurse yesterday who agreed that seizures were one thing that still made her nervous as a nurse but that she remembered the ER nurses used to be annoyed when parents brought their kids in for febrile seizures because it wasn't necessary. I thought, those nurses need to hold their own kids while their lips turn blue before they pass judgement on other parents.
| By JennR | 12:28 PM
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Comments
Oh my, what a scary scary thing. I'm glad your little girl is alright and hope you can feel more "normal" again soon. Thanks for posting this. I've never heard of such of thing and if this happened to my child I'm sure I would freak out.
Posted by: michellew at May 8, 2008 2:08 PM
Thanks for sharing, what a terrible experience! I am glad that Julia seems fully recovered from the seizure and I will be praying that it doesn't happen again!
Posted by: Joy Lynne at May 8, 2008 2:11 PM
Oh my dear sister, I know that I have talked with you numerous times since the "event" but reading it here again makes me so sad for you. Your writing describes it so well. I am sooo sorry that you experienced it but am sooo very proud of you and how you handled it. I always tell myself that if these seizures are the only things that bring the ambulance to my door while raising my children than I will praise and sing out my Thanks to Jesus Forever and Ever. I love you dear sis!!
Posted by: Heather at May 8, 2008 2:21 PM
Wow, I can't imagine how long that minute lasted. I am very glad for you that you had the experience of your sister to help your worried mind. Thank God for those timely conversations! I hope you are able to pass on your story and wisdom to other moms. I also pray that it doesn't happen again. You're a trooper Jen, keep up the excellent mothering!
Posted by: katiek at May 8, 2008 3:31 PM
I can't imagine, my daughter...I just can't imagine!
Posted by: Nann at May 8, 2008 4:21 PM
Lisa told me this had happened, but reading your account of it just brought tears to my eyes. How horrible! My three year old has spiked horrible fevers since she was little. The worst was when she hit 105. I called her doctor with my car keys in my hand! I have been warned that febrile seizures are a possibility, but fortunately, she's never had one. I've even gotten to where her high fevers don't freak me out anymore. She spikes a fever if you look at her cross-eyed!
I'm so glad that Julia is doing better now, and I pray that you don't have to experience anything like that ever again!
Posted by: Tracy at May 8, 2008 6:11 PM
OH JENN! I had no idea! I'm sitting here balling. How horrible! Our sweet Julia. I had no idea. I'd call you but I'd just cry on the phone. I can't imagine how terrifying that must have been, how incredibly horrible. I'm so sorry. I love you guys so much!
Posted by: valerie at May 9, 2008 8:50 AM
hey jenn, i could not even make it through reading this outloud to chris....i totally choked up. i am so sorry that you guys had to go through this. even if it is "harmless" it would completely freak me out, and i would call the ambulance as well. thank the lord above that he is watching over us and our little ones. we love you guys and i'll call you when i get back!
Posted by: erin at May 9, 2008 11:04 AM
I'm crying too. I would have definitely called an ambulance as well. I hope and pray you are able to rest and heal.
Posted by: mary at May 9, 2008 1:27 PM
Oh Jenn... seizures are so terrifying aren't they!?! Poor Julia. But really poor momma.
Your words describing how horrible it is to hold your child while seizing was exactly right. You did so great and kept your head together which is just what Julia (and Andy) needed! Patrick and I usually take turns freaking out during Abby's prolonged seizures. It is just horribly scary and not natural for a mother's heart to not be a mess.
You never know how long a seizure will last, so I think you did the right thing by calling an ambulance. The ER staff can deal with it!! It's better then taking your kid in for a runny nose, right?!
I'll be praying for your heart to heal and no more seizures at your house. I hate those things!
Love you,
Patty
Posted by: Patty at May 14, 2008 3:50 PM
I have just come across this blog while googling febrile seizures. My 18 month old son is in hospital right now with my wife, and I'm pretty sure that's what he had...which I didn't know a few hrs ago, I didn't see the seizure I just came into his bedroom where he had been sleeping at my wife's shouting and picked him up (It thought she had seen a mouse LOL!). He was pale and blue around the lips and I picked him up and he lay cold and totally floppy in my arms with his eyes rolled back in his head, and I couldn't be sure he wasn't breathing, but he seemed to start shallow breathing when I got him into our bedroom.
And this from my little man who wakes when you even walk past his bedroom and creak a floorboard.
I felt a sense of disbelief while it was happening. I was wondering how long he hadn't been breathing, and was thinking so this is what it's like when your child is in your arms and passing away from you and there's nothing you can do. But I propped him up in my hands, and I just stayed there with my ear by his mouth listening to the magic sound of his breath while my wife was on the phone to 111 and thought to myself as long as he's breathing he can hang in there, but I was scaring myself with thoughts of Meningitis. His eyes didn't start moving or any limbs until the ambulance arrived, I don't know how long that took, it must have been less than 10 minutes I think.
When he left he was starting to look around hold his head up and move his arms, the best site I've seen for a long time.
But now I have had a chance to google everything that happened (for the last few hrs!) it sounds almost text book febrile fit, Thank God! He had had a high temperature off and on during the day. Fortunately talking to my daughter she was trying to drift off to sleep when it started so he hadn't had the fit long.
So they're apparently harmless but in my case fully terrifying - who would be a parent aye?!
Posted by: Matt at June 7, 2008 8:15 AM
Thank you very much for posting this. My 2 yr old son suffers febrile seizures too. His first occurred 2 months ago while he was at daycare and his provider was quite freaked out about it, understandably. His 2nd was yesterday and it was absolutely horrifying to witness. Your account of helplessly holding your daughter is so precise and accurate of the feelings going through a mother's (parent's) mind. Although our son had already suffered one febrile seizure once before and we supposedly "knew" about them it was still extremely frightening to witness.
Today, my son is just fine...other than his little cold. But like you, I have replayed in my mind my son's seizure; his eyes rolling around, the gurgling of his saliva, the trembling of his hands and his lips and face turning blue. I have read and read and have been told by a number of well meaning friends and relatives as well as a handful of doctors and nurses that these seizures are very normal but they are still ever so frightening.
My son had his seizure while we were in the car. We pulled over and got him out of the carseat and held him on the side of the road. You can't help but think that this is it for your child---as silly as that seems for such a "normal" thing...but a very natural thought, I think.
Is it silly that today, while running errands, I completely avoided that street as I didn't want to remember? Of course, my mind will go back to normal and not be so dramatic the more I see my son back to his usual self.
My husband and I have learned that we will most likely not be leaving our house without Motrin/Tylenol.
Thank you for validating my fears and emotions from my son's febrile seizure.
Posted by: Laura at August 23, 2008 11:13 PM
Laura, I'm so glad you left a comment. I guess with a title like the one for this post I was bound to get some hits while parents were looking for info on febrile seizures. You are certainly not alone in your fears and emotions! For a few days after our experience with Julia I teared up when walking by the bathroom because it seemed like some sort of crime scene or something and I cried for days in the shower. But things did return to normal.
Now we're right on top of fevers with Julia as well and give motrin for low grade temps, no more letting it run its course! I truly hope that the experience on the side of the road was the last one for you and your family, its a terrifying experience.
Posted by: Jenn at August 25, 2008 11:27 AM