My Toddler Had a Seizure: What I Learned

“Motherhood: All love begins and ends there.” – Robert Browning… Sunday morning was the scariest day I have ever gone through in my entire life. When Abby was born, things went wrong during delivery. They don’t know exactly what happened – a big combination of things. But they brought the NICU team into my delivery room, and when she was delivered, she arrived white as a sheet, and not making a sound. My mom thought she was stillborn. The faces of the doctors around me were so concerned, I was really scared. They took her away before I could hold her, to give her emergency care. When a doctor arrived to tell me what was going on, about an hour later – she said that we would know by morning if she was going to make it. I remember that moment vividly, and until now, that was the scariest thing I’d ever been through. Until Sunday…

“Life in abundance comes only through great love.” - Elbert Hubbard

Abby has had trouble sleeping for a few months now. But it’s not too bad. Then Saturday night, she woke up ALL night, every hour. She would cry, and ask for weird things – like going for a ride in the car, or to watch Coraline. She never asks for cartoons at night? Around 5am she woke up again asking for milk… I gave her some to help her get back to sleep, and she threw up all over the bed, where she was sleeping with us. But she’s done this before too. I cleaned her up, and remade the bed, and we attempted, once again, to go back to sleep. When she awoke a half hour later, I decided that I’d just get up and start my day – it didn’t seem like sleep was going to happen, you know? I rolled over to sooth her, and she again was crying to watch Coraline. I was about ready to get up and bring her into the living room to watch it – when it happened. Suddenly, she rolled her eyes into the back of her head, her body went rigid, and she began to move erratically. Mike rolled over, totally freaked out, to ask what had just happened. Eyes wide, I couldn’t even talk… I just stared at her, terrified by what I’d just seen, only half awake, and unable to process it. Finally I just got up to bring her to watch her movie, and wake up enough to figure out what had occurred… Before we even reached the living room, as I held her, it happened again. Both times it lasted only around  5 seconds – but it was incredibly scary. I ran back to the bedroom with her, crying heavily, and told Mike to get up – I thought Abby was having seizures, and we were going immediately to the ER. We rushed to get ready, and headed off for what would turn out to be an even more terrifying day than we could imagine…

toddler had a seizure

“You can’t think how I depend on you, and when you’re not there the color goes out of my life.” – Virginia Woolf

We arrived at a mostly empty ER around 6:30am Sunday morning, and were quickly taken into an exam room. Abby seemed to be acting normally, sitting on that big hospital bed, playing with her stuffed monkey. She had no fever, but an elevated heart rate. The doctor ordered some tests, and we did what you do most often in an emergency room – wait. After about 45 minutes, the nurse arrived to do blood work. As she held Abby’s arm, and Daddy held her other side, and I was holding her legs, and they prepared to draw blood – Abby’s head once again snapped back, her eyes rolled wildly, and for 2-3 seconds she was seizing again. We panicked – but the nurse continued and poked in the needle. Abby SCREAMED… then it happened. Her whole body went stiff, her arms and legs began jerking wildly, her eyes rolled and her head shook… And it didn’t stop this time. We yelled that she was having a seizure, the nurse said, “I see.” Did nothing. I ran to open the door, and called for the nurses to help. They just stared at me. I SCREAMED at them to do something, and turned to look at Abby, and she was still convulsing… I didn’t know what was happening, but in that moment, I thought I was losing my little girl. {Tears in my eyes just thinking about it…} I heard the panic and fear in Mike’s voice, and felt so incredibly helpless as I watched my sweet baby girl in such a state. Finally… After almost a minute of this, the nurses helped us. They put the bed rails up, so she would be safe from falling. They gave her an oxygen mask so she could breath. And we waited. And waited. It felt like hours before it stopped – but it was about 3 1/2 minutes. {Which is an incredibly long period of time when you’re watching your child have a seizure. The longest 3 1/2 minutes that exists}.

When it was over, they decided to take her right away to have a CT scan, since she would be groggy for a little while, and would hopefully be able to stay still. She was back about 10 minutes later, but wasn’t aware of who we were for another 30 minutes or so. She alternated between scared screams of confusion, and falling almost asleep as I would sing to her… You Are My Sunshine. We would watch her heart rate on the monitor – normal toddler heart rate is around 120. Her’s was topping 200, which was very scary to watch. Finally, we were moved from the ER to Pediatrics, where we had an incredibly compassionate, kind, and knowledgeable team to care for her. Much better than the ER. Abby slept most of the day, which is what they wanted her to do. A seizure makes you incredibly exhausted. The blood work had come back fine, the CT scan was fine, and they were very unsure of what was going on… Until finally, Abby showed that she was running a mild temperature. The doctor said that was the best news we could get. And I learned about a form of seizure that I had never heard of before, but is more common than I would have ever guessed….

Febrile Seizure: A febrile seizure is a convulsion in young children that may be caused by a spike in body temperature, often from an infection. Watching your child experience a febrile seizure can be alarming. And, although a febrile seizure may last only a few minutes, it may seem like an eternity to you.

A febrile seizure occurs in about 1 out of every 25 children between the ages of 6 months and 5 years. {Click it to tweet it.} I can’t believe that I had never heard of this before? And after asking for advice on Facebook, I had so many friends who have gone through this as well. A febrile seizure really can’t be prevented – so you should never feel guilty that perhaps you did anything wrong. The seizure is often the first sign of illness, and happens like it did to Abby – before she even registered as having a temperature. So there is just no way to prevent it. After they have one, {or even several, like Abby} the child will be very confused, and incredibly drowsy. It’s best to let them sleep it off, as long as needed, which is what we did. We were nervous as she slept – each movement made us jump – was this another seizure? But she slept peacefully, and did not have any more of them – thank God. The doctor was waiting for her to wake up, so we could see if she had fully recovered… I was so anxious. I am a worrier at the best of times, and this was just so stressful. My stomach was in knots, my brain running a million miles an hour, and my nerves were just shot.

Recovering from a febrile seizure

Once Abby awoke, the doctor came in to examine her. He tested a few reflexes, listened to heart and lungs, the basic stuff. She was crying for “dinner” and “bites,” so he had me hold a snack to encourage her to walk towards me. He untangled all of the cords and IV’s attached to her, and set her down on the ground so she could come to me – but her legs didn’t work. She took a step away from his hands that held her up, and dropped to the ground. She was clearly scared and confused, and it broke my heart. And I was terrified that she was not going to be ok, that something had been damaged to her, that she wouldn’t recover, that there was a bigger problem. Terrified. But very soon, she was able to not just walk – but RUN – into the lobby of Pediatrics, with the nurse scrambling behind her, pulling the IV stand – to see the “fishies” in the big tropical tank. Once I saw that, much of my fear evaporated. She was still a little “off,” but the doctor agreed that it would be best to head home with her for the night, and get some rest. The next day {Monday} she was still very off balance and having dizzy spells, which we told the pediatrician about at our follow up appointment. She said that the effects of a febrile seizure wear off within 12 hours – so we’re hoping that it’s whatever virus she has, the virus that caused the original fever, that’s making her act different. But – they are not 100% sure that this was a febrile seizure. So at this time, we have to watch and wait – wait to see if she gets better and back to normal, and watch for additional seizures WITHOUT fever, which would be a clear sign that this is a bigger problem.

Facts about Febrile Seizures

Since I consider myself to be pretty medically savvy, I was shocked to not know about a condition that affects so many kids. If I had known what this was, I might have been slightly less panicked when it happened. {Not much, but a little.} So I wanted to share what I’ve learned with you, so you can be as prepared as possible if this unexpected scare ever happens in your family.

  • What is a febrile seizure? Febrile seizures represent a unique response of a young child’s brain to fever. Fortunately, febrile seizures aren’t as dangerous as they may look. They’re usually harmless and typically don’t indicate a long-term or ongoing problem.
  • What causes a febrile seizure? Most febrile seizures occur because of a sudden spike in body temperature, and most occur during the first day of a fever. They are often the first sign that anything is even wrong. The fever is usually caused by a virus of some type, anything from a common respiratory illness to an infection like Roseola. Sometimes they are caused by fever from immunizations.
  • What do you do if your child starts having a seizure?  {Click to tweet, and share the info.} There isn’t much anyone can do to stop a seizure, although a medical team can administer medications to halt it once it’s past 5 minutes. So your first step is to make sure the child is laying down on a flat surface, on their side if possible, to reduce risk of choking if they throw up. Move all nearby objects away, and place a blanket under their head if you’re on a hard surface. Loosen clothing at the neck if needed. And call 911 right away. {It’s better to have them already on their way and not be needed, then wait until the seizure has lasted too long, and you must wait even longer for them to arrive.} If the seizure ends quickly before you have called 911, take them to see a doctor for evaluation right away.
  • What is the treatment for a febrile seizure? Most often, there isn’t much treatment.  They will run blood work, urine analysis, and do a physical exam – to try and determine what caused the fever, and make sure they didn’t injure themselves during the seizure.Unless your child needs treatment for the underlying infection or virus that has caused the fever, they will be checked out by a doctor, and released back home. It is super scary to bring them back home again, but since most children will not have another event, it’s safe, and the best option.
  • Can you prevent a febrile seizure? No, you cannot prevent a febrile seizure. Some people suggest giving your child a cool bath, cooling them with damp clothes, or giving fever-reducing meds will prevent it – but they aren’t going to prevent a seizure from happening. As I mentioned, often the seizure is the first sign anything is wrong, before the fever even shows up. So there is just no way to prevent it, you just do your best to care for your child during and after, if one occurs.

So what happens next, you’re probably wondering. Well, hopefully for you, and for us, this will be the ONLY febrile seizure your child ever has. Only about 30% of kids who have had one febrile seizure will have another one with a future fever – and out those who do, only 30% of THEM will ever have a third one. Most children grow out of this by the time they are 5 years old. There is no evidence that it affects their intelligence or development. While absolutely terrifying to watch, they are not at all as dangerous as they appear. But since in very rare cases, the child has an underlying seizure disorder such as Epilepsy, and their first seizure was simply triggered by the fever. But this is very rare, and nothing to worry about. If your child has another seizure, in the future, without a fever, then this is something you will need to discuss with you doctor. We’re praying that this really was a febrile seizure {the doctors are pretty sure, but not totally}. And hoping that this isn’t any type of sign of other issues. And Abby doesn’t seem to remember what happened, so hopefully it fades away into another of those frightening moments that all parents have to endure as they guide their little ones towards adulthood.

“We do not remember days, we remember moments.” - Cesare Pavese

While watching your child have a seizure is one of the scariest things in the world, it is not the end of their world, or yours. A seizure is almost never life threatening. A febrile seizure is not going to cause long-term damage to your child intellectually or developmentally. Learning the basic steps on how to care for a child who is having a seizure is very important to ensuring their safety during an event. So I encourage you to share this post with other parents or caregivers that you know. I wish I had known more about these before it happened to us. It would NOT have made it less terrifying, but I would have felt a little less helpless, and would have at least understood a little bit better what was happening to her.

“True wisdom lies in gathering the precious things out of each day as it goes by.” - E.S Bouton

UPDATE: Unfortunately, what Abby suffered from on this day turned out not to be a febrile seizure. I’m working on a full update post, with more information – coming soon. But, for now, here’s the basics. She had more seizures. The first one, she again had a very slight fever when the paramedics arrived. But, that can be common after having a seizure, since you’re body is in distress. Also, we found that after many more seizures, she had certain things that were “triggers” – making her more likely to have the seizures. Any time she was slightly sick and got a fever, we had to treat it right away. Being overly tired or stressed. We started to see the warning signs earlier, and could sometimes predict the seizures. For months, we would be in and out of the ER and the pediatricians office, but no one knew what was wrong, could find a problem, or would medicate. Finally one day, a new ER doctor decided enough was enough – it was time for meds. The process of starting her medication, called Keppra, was horrendous. Side effects say things like – changes in personality, thoughts of suicide, complete legarthy. In a 2 year old, it meant complete and total melt downs, where she would cry in absolute heartache – and look to us, and you could tell she had no idea why she was feeling that way. We started to think we could no longer let her go through it – but at about 2 weeks, she evened out. It still changed her each day – about 30 minutes after taking her dose, she would become a different child for about an hour, almost bipolar in her mood swings. But then would go back to her normal happy-go-lucky self an hour later.

And, she has now been seizure-free for over a year, since starting on her medication. We’re hopeful that she will grow out of them – the younger a child is when starting seizures, the more likely it is that they will grow out of it. In another 6 months we will have new rounds of tests, and possibly be able to wean her off of her medication. *Fingers crossed.*

If you have a story about seizures to tell, more information to share, I would love to hear it – as I’m sure everyone else reading would too.

 

 

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Comments

  1. This had me on the verge of tears just thinking about it since our kids are so close in age Meagan. Thanks for being willing to share it and that info just in case.

  2. When I worked in childcare we had a little boy who had seizures. I remember the first time I saw him do it never have i had a moment while working in childcare that has ever scared me as bad as that did. But with 20 something kids I had to stay calm, get the other teachers to move the other kids while the office contacted 911 ( we had orders too if they lasted longer then a few mins) I had to sit with him until the ambulance showed up. That is an imagine I will never forget but thankfully I know more of what to do if that case is ever to arise in my present again. You would be surprised though I have had about 5 kids in the past that their parents warned us this might happen if they ever spike a fever. If one of the kids ever did spike any fever at all we would cool them off till their parents arrived just to be safe. I hope your little girl is ok and this doesn’t happen again to her. thankfully she is on the mend!

  3. Wow! I have 3 kids under 10 and have heard the term but never seen this in person. I truly believe knowledge is half the battle but I’m with you – I would have been completely a mess! We’ll be praying that things even out and you have no more problems! Now if you can let your mommy mind get some rest and peace!!!

  4. I have tears in my eyes for you because I know how absolutely scary this is! My daughter had what they call “breathing spells” starting at 9 months old. If she got hurt – she would hold her breath and go into what looked like a seizure (her not breathing told her body to shut down). Her eyes would roll back, she would get stiff, she would shake, that was that. She continued this from 9 months to 4 years. I prayed for the day it was over so I never, ever had to see my baby girl go through that again. It was the worst experience of my life. Until…

    I was picking her up from school and the kids were all playing on the playground. I was talking to one of the moms when all of a sudden, my 6 year old flipped over the top of the slide (she was climbing up it) and fell to the ground landing on her lower head/neck/upper back. She immediately sat up to her knees and then I saw it – the eyes rolled back in her head, she got stiff, and started seizing. I laid her back while she continued her seizure (secretly freaking out).

    I am CPR/First Aid trained. I have worked with seizures for years, but nothing – and I mean nothing – prepares you for the scare of your life when it is your own baby.

    I am sending lots of positive thoughts and prayers to you and Miss Abby. I hope she is feeling better and I pray you (or I) never experience that terror again! Hugs Momma!

  5. I hope she is doing better. I am so sorry that your little girl and your family had to go through this. I couldn’t even imagine having to watch my child go through this. Thanks for sharing your story so that others may learn from your experience.

  6. I cannot imagine going through this! I have 3 girls and was lucky enough to have never experienced a febrile seizure. Thank you for sharing your story and this really valuable information here Meagan! Sharing with my followers now.

  7. My son had something just similar to this when he was about 1 1/2 years old. He was fine during the day and took his routine nap. When he woke up, I felt he was warm and decided to take his temperature using one of pacifier ones. I was holding him up in my arms and plopped it in his mouth. About a a few seconds later it was falling out of his mouth and again put it back in without thinking about it. I looked at him and noticed his eyes was rolling back and he was going limp.

    I called 911, had him laying on the floor and his eyes was wide open, but he was coherent to me calling his name. The 911 operator told me to remove his clothes to cool him down and then I kept calling his name to see if he would respond to me. After a bit, he did and the ambulance just pulled up and took his temperature and said he was okay and had a slight temperature. My little guy was holding onto me and seeing what they were doing as if nothing happened. That was the scariest feeling ever and I just had tears in my eyes through the whole deal.

    I hope your little one is feeling better now and thank you for sharing this information. I think if I would have known a little more about how seizures go, I may have been a little calmer.

  8. if this happens again see a specialist. our er told us that our daughter 9 mo. at the time was having febrile seizures. they were happening every 3 month (give or take a day) and every single time they said the same time after a couple times i looked into a specialist who ordered us to come straight to her. we did and we also found out that it was a nerver in her brain had pressure on it and as the pressure would build it would finally be too much (every 3 months) and when the pressure released again she would have a seizure. it was something that could have killed her an the er was just too unwilling to listen to us. we are now on medication and seizure free 4 yrs later. :) good luck with ur journey

  9. Thank you for sharing this terrifying moment for you so that all can be better informed. I will keep your little girl in my thoughts!

  10. That must have been truly terrifying. I will keep you all in my prayers!

  11. Megan I am so sorry that you and your little Abby had to experience this! I will continue to keep you all in my prayers this experience is over for you and your little girl! It certainly is a scary feeling, especially when you have no idea what is wrong! Thank you for taking the time to spread the awareness of this with other parents to help us all be a bit more prepared!

  12. I had tears just reading. My son has Epilepsy. I remember the first few seizures how terrified I was. I also was screaming, DO SOMETHING as doctors just watched. Thankfully my sons seizures are very mild most of the time, but they are still very scary. We also have to watch for the febrile seizures. Anytime he gets a fever, I am on 24 hour watch. Hang in the Momma! Know that you are not alone! If you want to talk, I am always around!

  13. Talk about a scare… I am hoping that you never have to deal with that again. Had to be terrifying. Thanks for sharing all the good info about the febrile seizures with us!

  14. I’m so sorry you had to go through this :( I’ve heard of them before–and because both of my kiddos have been rushed to the ER with HIGH temperatures I was told I’m very lucky they never had them. ((Hugs)) to you and your little one both!!

  15. Wow I would have been terrified too! We haven’t gone through this and I hope Abby is okay.

  16. I cannot imagine what that had to be like. I can’t even stand to see my kids sick, let alone seizing right in front of me. I deal with that with David sometimes, though because he has epilepsy. I’m hoping that none of my kids pick that up. It’s really scary :(

  17. my grandson had these seizures growing up. Probably had 4 total. He did outgrow them – hasn’t had one in 7 years or so… He’s 15 now. I know how scared you must have been but hopefully you’re little one will not have another!

  18. thanks for sharing. Being a MOM sure is a tough job with lots of rewards!!

    Hope you don’t have this experience ever again.
    Michele

  19. Oh my goodness! So scary! I worry about this all the time with Elijah because he has a weak immune system and runs very high temps like 103 -104 all the time. The doctors arent sure what is wrong with him.

  20. I’m glad it wasn’t worse than that and I hope you never have to go through that again. It sounds really terrible. I had no idea that could happen before the temperature was even showing up.

  21. I had a febrile seizure when I was too. What a scary experience it must have been for you. I hope she is ok!

  22. two*

  23. I am totally crying reading this. I am so happy she is ok and blessed to have this information now as my son is 3 and thank you for sharing your experience. ((hugs))

  24. This happened to my sister when she was about nine months old, and it was super scary for me. My parents left me (I was 16 at the time) and an older sitter home to babysit, because they were going to a wedding in the city. She was fussy the whole night before and really cranky that whole morning. It happened the first time when I went to change her diaper, I freaked out and yelled for the sitter. She was all frantic and didn’t know what to do. Before I got ahold of my parents on the phone, it happened again, only longer so I just hung up and called 911. When the paramedics got there Miss was all limp and whimpering, and they kept asking me what I did to her, if I dropped her or hit or or something. Of course by now I was crying, the sitter was crying and my other little brothers were all crying so it was pure chaos.

    They made me go with them to the hospital and the sitter stayed with the two other kids and tried to get ahold of my parents. It was the longest day of my life, but the doctors assured the police that it had nothing to do with anything we did, it was just an infection. It took Miss about a week to get over the virus and when she was better it was like nothing had ever happened. Scary.

  25. So sorry you had to go through this! We had one experience at the ER with my daughter and it makes you feel helpless. All you want to do is make your little girl feel better. Hugs to you and glad sweet Abby is feeling better.

  26. Meagan, this is so scary and I can’t imagine that, even with the knowledge, this would be any less scary!! I hope that she gets to feeling better and acting herself again. You are in my prayers!!

  27. This is such a scary thing to deal with. My neighbor and dearest friend has a son who just started having seizures. It is the scariest thing when he begins. And it breaks my heart as we can’t do anything about it. His doctor said that he will be at high risk for more seizures for the next year, with his chances diminishing over time. So we all keep a close eye on this little guy. He is my son’s best friend so he is often over for playtime. It is helpful to know what to look out for and how to handle it when it happens.

    My heart goes out to you; that you have to deal with this also. It really is terrifying, and I think you probably handled it all better than I would have. My prayers will be with you and your family.

  28. OMG! If this happened to me, I wouldn’t know what to do and would definitely cry if I see my baby like that! Thanks so much for posting something that a lot of moms can learn from!

  29. About a year ago, my daughter was running a fever. I gave her medicine to bring it down and went to check on her a little later. She was sitting up in bed, just shaking. I took her to the ER and her temperature was 104–remember I had given her medication too! Reading your story, I wonder if she might have had a febrile seizure.

  30. Peggy Lemos says:

    I had this happen with my oldest daughter. I knew she was having some kind of seizure as her older brother had a grand mal epileptic seizure when he was 2. Of course our regular doctor was out of town and we had to see a doctor that was filling in for him. He tried to convince us she had a grand mal seizure just because her brother had had one. I refused to let him medicate her for epilepsy. We waited until our doctor returned and he promptly told us she had had a febrile seizure, not an epileptic one. Lucky for us our doctor was the head doctor of the hospital and the other doctor was promptly fired for going on nothing but family history. Thank you for sharing this as other parents could have the same experience we did!

  31. OMG! What an ordeal! I would have been absolutely terrified. Thank you so much for not only writing about your ordeal, but sharing facts about this in your blog. I’m so glad your little girl is ok and rebounded so fast, but that had to have been terrifying!

  32. I am so sorry that you guys had to go through this. I can’t imagine that fear. I am so glad you are sharing this information though! Two of my neighbors have been through this and it can happen to anyone. Thank you so much for sharing your story, this information, and helping other parents prepare a little. I am so happy that your little girl is ok. :)

    • Sunshine and Sippy Cups says:

      Thank you so much – and I do really hope it can help someone else to learn about this, so they know a little more about what to expect if it ever happens to them!

  33. I literally have tears running down my face, I too lived your nightmare but bub was 9 months old. Bubs birth had his cord wrapped around his neck several times and the doctor had to stop me from pushing to cut the cord so he did not strangle more. I was told that the seizure he had at 9 months was more than likely not the first one and would not be the last. He is now 11 and on medication to control the seizures. He rarely has one let alone a really bad one so when he does I feel like it is the first time again. Hold your baby tight, I do!

    • Sunshine and Sippy Cups says:

      How scary for you guys… I cannot imagine having to go through this with her again, although I know there are good odds that I will. Big hugs to you guys!!

  34. Wow. What a story. I am so frightened just reading that story. I’m sorry you hard to experience that. Thank you for sharing and informing.

  35. Wow, this is absolutely frightening to read. I am so sorry your family went through this. I hope your daughter is feeling better. I truly appreciate you sharing this because I had never heard of this before until reading your post.

  36. Hope Abby is feeling better! I am sorry this happened to you and your family. I don’t have kids, but my dog has seizures when he gets sick. It was terrifying the first time and I was screaming for my husband and crying. We took him to the “pet ER” and had to wait almost 2 hours. He was better by the time he got seen. I would have been hysterical too if it happened to my baby.

  37. Hi there,
    I came across this post by accident and am SO glad i did. My daughter has just turned two and has suffered with febrile seizures since she was 6 months, all caused by various virus’s, some I’ve never heard of. The way you have written this is beautiful and I think any mom or dad who has ever experienced this will agree just how absolutely scary it is to watch. We have a convulsion kit on stand by now and just pray every day that they are getting fewer and further apart. Unfortunately there are very few “go-to” sites for this kind of thing, and the internet can be a very scary place when you’re desperate and looking for answers. Thank you for sharing your personal opinion, and for reassuring me a little bit more that my baby girl will grow out of this one day. For now we just stay prepared and keep an eye out for the signs – hers are generally lack of appetite, hot cheeks but cold body and not wanting to be touched, but being super clingy. Those are just some I’m aware of. I will definately share this post, I hope your baby girl is 100%. Thanks again…

  38. Thank you for this information. My cousin’s little 8 mo. old girl is in ICU after having 12 seizures with no fever. We are all awaiting test results and praying for the best. I hope your little girl is seizure free and doing great!

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