It’s been one year since the scariest night of my life and I wanted to talk it.
One year ago, Max had two febrile seizures. It. Was. Terrifying. And hopefully by sharing this story, some of you mamas will be better prepared for this super common event. Because I know I wasn’t. And I thought I was.
Okay….so the story began with one year old Max getting a fever. It was not anything out of the ordinary. In a house with four boys under 7, fevers are super common and usually we just let the low grade ones ride out. Sometimes they were accompanied by other ailments but in general, I didn’t really ever freak out about illnesses. In fact, our pediatrician knows me as one that I don’t bring the boys in unless they really do in fact need treatment or a prescription.
The day that the fever began it was nothing of note. The next day was a hot one (as most August days in Georgia are) and Will had baseball practice during which Max was especially clingy…sitting in my lap the entire time. He was lethargic and hot but he tends to be my cuddle bug anyway so I didn’t think much of it. When we got home, we took his temperature and it was 101….still low grade so we decided to go to my mom & dad’s house to take the boys swimming. We figured that it was a good way for everyone to cool off.
I noticed that he did not want to be submerged so his feet and lower legs were the only thing in the tempid water and I ended up walking him around for a few minutes. That’s when I noticed him acting odd. I thought most seizures started with a noise, a cry or a notable action or shaking. But his was different. His head fell backwards like he was looking at the sky. I could tell his eyes weren’t exactly focusing on anything (I seriously looked around for an airplane thinking he was just watching a bird or a plane or something) and he didn’t respond to me calling his name. I started saying “Max, Max, look at me baby. Max. MAX.” over and over. My dad was standing there and he is like me when it comes to emergency situations so immediately I looked up at him and he said “BOYS. GET OUT OF THE WATER.”
I was holding Max in a prone position above the water as I tried to get out of the pool and noticed that he was turning pale and a little blue. Soon I could tell he started breathing normally again and Jeremy was down by the pool at this point. I explained what happened and told them that I think Max had a febrile seizure.
I called the pediatrician (the office was closed so I left a message) and then called my friend Carrie. I knew Carrie’s daughter had febrile seizures and she is always a good person to ask about medical stuff because we approach things similarly. And I also called my friend Karen who is a nurse.
Long story short, we (Max and I) got into the bathtub with room temperature water and cooled off and decided to head home to get the thermometer (we didn’t have one with us at my parents house) and some Motrin. Carrie told me that Motrin worked faster and better than Tylenol for this situation and I think she was right.
So we got home and Max was exhausted but we thought that his first seizure was overall very uneventful.
We administered Tylenol (it’s what we had!) and that night he was staying with us in our room. The pediatrician called back at this point and told us that we should have called 911 and that if it happened again, then we should go to the hospital because seizure clusters are sometimes indicative of more than just a fever. She also warned us of any seizure lasting longer than 5 minutes and I asked her a few more practical questions and that was that.
As he laid in our bed, we took his temperature about every five minutes. Roughly four hours after his first seizure, I noticed his temperature was starting to spike….it went from a 100.5 to a 104 in about 60 seconds.
Max opened his eyes very wide and looked at me with a face of panic….like he knew it was coming. He let out a whimper and then a shrieking scream that I won’t ever forget. I had asked the doctor what I should do if it happened again….so I knew that I should hold him facing me on his left side and make sure to check his tongue every few moments to ensure that it wasn’t blocking his airway.
Jeremy was in the other room so I called out for him “It’s happening again Jer!” He started the timer and I asked him to quickly call 911 and then video Max because I knew that I would forget everything that was happening.
The second one lasted much longer….roughly five minutes. Compared to the first which was only about 30-45 seconds, it felt like an eternity. And yes, I freaked out….which is unlike me but like I said….scariest night of my life. I hesitated to share this video with you guys but I decided to go ahead because if it helps one of you identify a febrile seizure and better understand the stages of one (onset, length, end and what happens afterward with the extreme exhaustion) then it’s worth it.
WARNING – This video is of an infant experiencing a simple febrile seizure. It’s not edited in any way. If your child experiences a seizure, please contact your pediatrician or an emergency medical professional immediately.
After Max’s seizure ended, the paramedics arrived and did an exam of Max and told us that it was our decision whether to take him to the hospital. Because it was the second one that occurred in such a short amount of time, we decided to head to Children’s Healthcare of Atlanta (instead of our local ER). My mom came over to be with the kids as they slept.
Due to Max’s age and the fact that he technically had two seizures (called a seizure cluster) in a short amount of time, they wanted to find out what the reason was and if it was epilepsy related, or a viral or bacterial infection. We checked in to the hospital and they started running the tests.
Since he had no other indicators at the time, the fear was that it could be very serious – a neurological abnormality or an acute illness.
After many hours of testing and results coming back negative, we still had no answers. They took blood samples and a poop smear and decided to let us go home. It was a very long night.
The next day we basically were on high alert baby watch the entire time. I must have taken Max’s temperature about a million times. We had picked up a bottle of baby liquid Motrin on the way home and the next 24 hours were painfully long.
Max is normally a very happy boy – always smiling and cuddling – but during the next day, he didn’t want to nurse or smile or cuddle. We would try to get fluids in him….we did a body-temp bath…and then lots of naps. He was exhausted from the seizures but also from being in the hospital all night.
It wasn’t until the very next day that we found out the reason….Max had salmonella. The way he got it is still a mystery. But we are SOOO glad it wasn’t something more complicated or serious. Within the week, Max was back to himself and we have not experienced a seizure since.
The reason I wanted to share all this with you is that you fellow mama’s can be ready for if something odd (like a fluke case of salmonella) strikes your little one. Here are some of my best tips for you if your baby gets a febrile seizure….
- have a good thermometer and take their temperature very frequently (we have this one now and like it)
- keep liquid Motrin in your medicine drawer
- a febrile seizure can not be prevented (the seizure is caused by a drastic spike in temperature. Motrin is not for prevention…it’s to keep them comfortable and lower the fever.)
- seizures can look like fainting, convulsions or twitching…some babies lose consciousness. Here is a good site for info.
- if a seizure occurs – call your doctor or 911.
- during a seizure, hold your baby on their side and check for blocking of the airway.
- dress your baby in light loose cotton clothing if they have a fever so that you can keep them comfy
- time the seizure and take a video to show the medical professional (we were asked repeatedly if the twitching occurred on both sides of the face and at what intervals….we would never have known the answer without the video)
- prepare your other children to understand what happened and how they should respond if they see a friend or family member having a seizure….all the boys saw the first one and we had lots of conversations later about it.
Disclaimer – I am not a medical professional….but I do encourage awareness of what to expect and how to prevent other repercussions and how to address it because obviously I made mistakes from being unprepared. We always recommend talking to your doctor about this before it ever happens!
Oh my goodness Katie- watching that video was heartbreaking! Kudos to you and Jeremy for staying so calm. This was really helpful. I’m usually very relaxed about illnesses with my kids unless their behavior is drastically changed and luckily so far we haven’t experienced anything serious, but it’s always in the back of my mind. I’m going to buy that thermometer! I generally rely on under the armpit method but I know it’s not all that accurate. Thank you so much for sharing!
THANK YOU for writing this. As a FTM of a 7 month old, I really value information like this. THANK YOU again!!
That video broke my heart, especially hearing how frightened you were. Thank God all turned out well.
That video made me instantly cry and panic with you! So glad he’s OK!
I am so glad you shared this, my son had one at age 2 and I’ll never forget it. I had no idea what was going on at the time, he is fine {and is now a teenager : ) now} but it was terrifying! This is something all parents should know about for sure. I am glad he is OK!
The video made me cry because I could acutely feel your fear and panic. Thank you for posting this. It was very informative. And it reminded me that my thermometer stinks and I need to buy a new one. I’m going to buy the one your recommended and make sure I have Motrin in the house.
Such a terrifying event. The video instantly made this momma cry too- so so sorry you had to go through that and am so thankful he is ok now! Thank you for sharing your story and information- I have never heard of these. Praise Jesus that little Max is ok now!
Oh my gosh Katie, how scary. I got about 30 seconds into the video and started crying. I can’t even imagine. I’m so glad that it hasn’t happened again!
Such a hard night, I’m so happy everything turned out fine and you sharing this will help others who go through the same thing.
I had my first seizure last October and was officially diagnosed with epilepsy in April. I sometimes scream out and look scared but I hope it helps to know that the seizure does not hurt.
All the best.
that video is hearbreaking…the fear in your voice 🙁 i was in the same boat exactly one year ago, not with a seizure but my 3 year old hemorrhaged after having his tonsils out. I am so grateful that I made him sleep in my bed that night, i don’t know what would have happened if he was in his own room. We got a 3 day stay at the children’s hospital for that. Our poor babies who are thankfully healthy/happy kids today!
It was so heartbreaking to watch, but thank you! This is such helpful information. I have always been warned to be watch out for seizures with my little ones so all the details you gave and the video are super helpful. And my oldest son actually did have some twitching in his face when he was an infant, after he had shots but I DID NOT REALIZE it was a seizure! (I was so dumb as a first time mom….first kids are really such guinea pigs.) I’m so thankful everything worked out okay for you and Max in the end.
Thanks so much for sharing this! I cried so hard watching the video. What a horrible and scary experience this must have been! Our little one once had pseudocroup in the middle of the night, so I totally get the feeling of panic and helplessness. Just awful!
That sounds so scary, and watching a few seconds of the clip on mute made me cry. I really appreciate you sharing because I’ve heard about febrile seizures but never seen one. This helps me feel like I’d know what to look for if my baby experiences this someday. So glad your little guy is doing well. You’re an amazing mama to your babies.
This is such valuable info to share – even the idea to video an episode or medical emergency! I cannot imagine how heartbreaking it must have been to watch one of your kiddos go through this. Thank you for being vulnerable and sharing!
Thank you for sharing. I cried through the whole video, the only reason I could watch it is because we know your max is happy and healthy.
Hi Katie! I’m a pediatric nurse and I work in the emergency department and we see febrile seizures all the time. I just wanted to say you did an amazing job and stayed so calm which is really important for kiddos having a febrile seizure. All you can do is wait it out and know that febrile seizures are very common and usually there’s nothing more serious at play but still so important to get them checked out!
This made me cry. Like full on crocodile tears. I’m sorry ya’ll had to go through that! I am so appreciative that you posted this, even though it is so personal. As a mom of two little boys (11 mos & 2.5) this is so helpful! It’s been a concern of mine since I have had 2 seizures myself but never actually seen one.
Thank you so much for posting this. You are so brave, so brave and this is such important information for all the other mamas out there.
That video made me cry. So scary. Y’all were awesomely calm.
Hugs, Mama. I couldn’t watch much of the video – it struck too close to home. My now 2.5 year old had a very similar seizure at 5 months that led to the diagnosis of a rare medical condition. Those 5 minutes he was seizing were definitely some of the most terrifying of my life. And I’m even a physician! Glad you haven’t seen any more and that he is doing well.
Oh my mommy heart! I cried through this whole video- but I am so glad that I watched it. If this ever happens with my littles I will 1. recognize it as a seizure, and 2. take a video. Without this info I can guarantee I would just go into hysterics. Actually, that is still a possibility, but thank you! I’m so glad Max is better and that night is behind you!
Oh sweet Katie! My heart goes out to you. My first child had two febrile seizures. One at 18 months and again at 22 months. It’s such a terrifying thing to go through. Prayers that you’ll never go through that again.
Wow that was so scary! Thank you for sharing! I’ve never even considered this happening and was definitely not prepared! Glad Max is doing ok!
I’m not one to comment, but I have to thank you for this! I am a mom to 3 boys and fevers never phase me, but knowing this and seeing your video is so very helpful. Thanks for putting a vulnerable, personal moment out there for those of us who can really learn from it. You are brave and strong and a great example! Honestly, the joy you find in being a mother is really touching to me. Especially when it’s hard to see the joy amid the chaos!
I couldn’t finish the video, I got too emotional since I have a little one same age than your Max. So happy that he is well and healthy.
This was horrifically sad. I was crying at my desk at work! My daughter has an autoinflammatory disease called a Periodic Fever Syndrome. She’s two now but has been getting fevers every three weeks since she was five months old. They regularly hit 105 to 106. The highest it’s ever gone is 107.2!! Luckily, she has never had a febrile seizure; at least not one that I have witnessed. I don’t know that I could stay as calm as you did. Thank you for sharing this. It’s so important for all of us to know how to respond in an emergency.
That shrieking noise is the same noise my husband let out as we were driving in the car. It is something but you never forget and reading that immediately brought me back in that moment. My heart broke and tears fell from my eyes as I watched your vid. As a mom of 3, and a son around Max’s age I just cannot imagine being in that moment. So thankful he was ok and grateful for you sharing this.
That was very emotional and brave of you to share your experiences with everyone. I thought that you were very calm and collected under the circumstances. I am sure that this post will be useful and informative to so many of your readers. Thank you for sharing.
Hey. Seriously thank you for sharing this. It was really hard to watch since my youngest is the same age as Max in the video, but I did not know what those types of seizures looked or sounded like until I saw this. I know it couldn’t have been easy to share this, but from one mom to another, thank you.
It took such courage to share this. Thank you. And you two were amazing with how you handled it. So glad he is ok.
You were so good to share this and, yes, it made me cry. When our 18 month old had her seizure we were asked if either parent had them as an infant. When I said I had them when I spiked a high fever as a toddler, they smiled and said that the next generation will probably have them also.
Being forewarned helps us to handle these very horrible moments. Thank you for being brave enough to share.
Wow that video was hard to watch but thank you so much for sharing! ❤️
I am a longtime reader but I have never left a comment. Thank you for sharing your story and heartbreaking video. If left me in tears but Im so glad I watched it and will know what to look for. As a mom to 3 little ones this is so terrifying. So thankful everything turned out ok.
Thank you so much for deciding to not only share your story, but share your video. My son too had a febrile seizure and in that moment you feel your whole world crashing down, regardless of whether you know the cause. I cried the whole time watching this…I can’t imagine that being one of my babes. Kudos to you for keeping your calm so that Max could know his parents were there with him and he was safe.
That is the most terrifying thing I’ve every seen. Thank you for sharing and educating us. I’m so grateful Max is ok. Hugs to you all!
Oh man your voice made me cry! I have never seen a seizure before. I would have never guessed it looked like that. I always envision crazy convulsing bodies and eyes rolling back. It’s so much more calm than that. So glad to know what to look for. Thank you for sharing such a personal moment in order to spread awareness.
Katie, thank you for choosing to share this. So very helpful. Xo.
My son had two febrile seizures last year at 16 months old. They were terrifying to watch. I’m so sad that this happened to you (and others here) as well. His first was in the car on the way to our local quick care clinic, I’m a medical professional so I remained calm until I made it inside, relayed all the details and they called a code and then paramedics to drive us to the local hospital which is when I lost it and began sobbing and was a huge mess. It was easily the most frightening thing that has ever happened with me present. We’re coming up on a year since his first and I’m dreading the anniversary. Thank you for preparing other parents for this. I can only hope it helps many people be aware of the possibility. I’d also like to add that it is hereditary, so if one of the parents have had a febrile seizure as an infant there is an increased chance of the child having them as well.
my son also had one when he was 18 months and my husband was home alone with our two boys. VERY traumatizing! At the ER we were also told all of the above that you mentioned but also that a febrile seizure can also be caused by a sudden fall of body temp. My husband had put him in a cool bath not knowing that it could also trigger a possible febrile seizure by lowering his temp too quick. It was something I didn’t know at the time so thought I would share as well. Also, piggy backing tylenol and Motrin helped when his fever started to spike again before it was time to readminister medicine. So sorry you all had to experience this too. big hugs.
Thank you for sharing this – while I am not a mom, I’m a frequent reader (I remember when Weston was born, omg) and I also had a febrile seizure as a 3 year old on Christmas. Luckily, my mom is a nurse, but even now, 29 years later, she still talks about how scary it was. I can’t believe how calm you were.
I experienced this same EXACT situation with my daughter but at the time I didn’t know it was a febrile siezure. Scariest night of my life. I think it is great that you are sharing this information. I have shared my story with all my friends so they are aware too!
Oh Katie! I have lived this! I could only watch a teensy bit of the video before I started crying. It was terrifying when my oldest (9 yeas old now) had his. He was 9 months old. Thanks for sharing this! It is one of those things that you don’t hear about until it happens to you! My oldest has never had another incident. I pray that max won’t either!
My son had a febrile seizure when he was 13 months old. He was sick with a fever, so my husband and I had him sleeping in our bed when his arms just shot up and his eyes rolled back in his head. It was the scariest few minutes of my life.
Thank you so so much for sharing. My daughter had one about 7 months ago and it was so so horrifying. I don’t think what the seizures actually look like are talked about enough and you sharing the scariest moment of your life with others will absolutely help.
How did you know it was samonella? Thanks!
Thank you so much for sharing! I don’t know you guys personally and I’m just a blog reader but that video brought tears! I am also very low-key when it comes to my babies illnesses, letting things run their course and feel that I’m generally prepared if something out of the ordinary happens, but I would have no idea about this! So happy that it was just a random bout of Salmonella and not something more serious for your little guy. My youngest brother has epilepsy but it didn’t start with him until I had moved away to college ( many years ago ) and I’ve never actually witnessed a seizure ( yet ) but those in the family who have say it’s the most terrifying thing to see! Thanks for the tips!
Thank you SO much for sharing. I had never heard of febrile seizures until a coworker’s son had a few. Why isn’t this something that is talked about at some of the first well baby checkups? Parents need to be told what this is and how to handle the situation BEFORE it happens to them
Thank you for sharing. Hopefully your experience provides knowledge for a new parent that can help save their child
They didn’t a poop test at the hospital and called us days later with the results.
xo kb
I can’t imagine how scary this must have been for you both. I’m so glad Max is okay and I’m hoping you all won’t see another of those.
My daughter, now 29, spent 3 days in the hospital when she was 1 year old due to a febrile seizure. She got a virus, got sick, yada yada and when the fever came on, it quickly spiked and gave her the seizure. She only had that one and it was quite different than the one your son experienced. Her entire body went rigid and she shook…for 3 minutes. I don’t even like to think about it, even now all these years later. The paramedics arrived after it had stopped and they took her to the hospital. It took 4 hours to bring her temp down, they kept her for 3 days. It was a living nightmare. After that, she never ever had another. The doctors told us to never let a fever get the jump on us, to literally start the Tylenol the minute a fever starts and continue with the medication until the fever completely breaks. She slept with no blankets, we gave her cool baths, kept the a/c at 65. This was how it went whenever she was sick until she hit 7 years old. Her doctor told us they grow out of febrile seizures between 5-7 years old and we weren’t taking any chances. To this day she hates the cold. FYI…if a child is throwing up and can’t keep the Tylenol or Motrin down…there are suppositories and let me tell you…they are literally lifesavers. My daughter didn’t like them but we were so glad to have them because she was a frequent vomiter when she was sick. I hope your little one never has another one. I know y’all were absolutely terrified.
Ok, I will confess I cried thru that video. When my son Jonathan was a year old, this happened to him. I had no idea what was going on. Watching that video of Max brought it all back to me 🙁 He has a bacterial infection that thankfully was treatable. I am so so sorry you had to go thru that with Max. Thank you for the tips for other moms out there.
My heart is broken for moms who go watch their sweet babies go through these seizures. Love and prayers sent your way.
This is all great information. My 9 year old had a febrile seizure when he was about 1, but was diagnosed with epilepsy in February (not related, so don’t panic!) Even with epilepsy kids, fevers tend to bring out seizures more often. My son was vomiting and had a seizure (eyes rolled back into his head, head kept falling backwards, and was unresponsive). If that happens, keep them tilted to the side so they don’t aspirate while vomiting. The best thing you and Jeremy did was stay calm and be supportive to him during his seizure. Parental instinct kicks in usually, but my husband completely froze and just stood there because he panicked. Also, if you aren’t holding him, the floor is the safest place so they don’t roll off the couch (but I know you were both right there so it was fine). So glad he’s okay now and hasn’t had any more. Thank you for not being afraid to share your story ❤️
Same thing happened to my son — I thought he died! Just eyes rolling back in head, stopped breathing, and turned blue. My husband is a doctor (surgical specialist, not a pediatrician), and he didn’t know what was going on! Though he knew about febrile seizures, here was no “seizing,” He was about to do assisted breathing when our son vomited and started breathing again.
Another seizure happened in the local hospital and then we were ambulances down to Boston Children’s, where they see this every day and were totally nonplussed. Just another typical, “complex” febrile seizure.
Feel that pediatricians should make parents more aware of this so that we don’t completely freak out!
Luckily, a had told this story to a friend who lived half a country away. When her neighbor’s child experienced the same thing, she was at least able to give her some idea of what might be happening while they waited for the EMTs.
Thank you for sharing. I was constantly worried about febrile seizures with my son and now getting ready for my daughter I know I will have those same fears. While it was hard to watch your video, it was so helpful because its actually nothing like what I expected so I at least feel a little more prepared for what to watch for. Thank you for sharing something so personal so that others could be educated and comforted.
How scary.
This is such a good thing to share. My son had a febrile seizure at 21 months. I had just read an article on a blog about febrile seizures so I was aware of what was likely happening. I was home alone with him and called 911 right away. I was terrified but since I had just read about febrile seizures I was able to stay fairly calm. Had I not read that article, I’m sure I would have gone into hyper-panic mode. Thank you for sharing!
I am a pediatric Trauma/ ER nurse. My fourth child has febrile seizures. I have seen hundreds of seizures in the hospital and know how to handle them. However, it is COMPLETELY different and terrifying when your own child has a seizure at home, with no way to help them or intervene. They have been the scariest moments of my life, I cry just remembering them.
Parents need to be aware of febrile seizures. They’re not always, “no big deal” as some physicians try to say. A dear friend just lost her healthy two year old son from a febrile seizure. Please keep your babies/children with you at night if they have febrile seizures and are ill. Don’t leave them unsupervised. They may stop breathing, my daughter has, and I had to give her rescue breaths until she started breathing on her own again. It’s so good to know about febrile seizures. We need more awareness.
My oldest daughter had periodic fever syndrome, as well. It was awful! Thankfully, she has outgrown it. She never had a seizure with it (for which I am eternally grateful!), but my youngest does have febrile seizures.
Watching that video was heartbreaking! I’ve known that helpless feeling with your tiny person that doesn’t have words and you aren’t sure what happening…worst feeling in the world!!
Sending all the hugs and love your way…
Wow, scary indeed. Thanks for sharing, I would have no clue what to do, thanks again for having the courage to share with all of us. Glad all is well.
I only made it about 30 seconds into the video and I had to stop watching- it reminded me too much of my son. My son has had 1 febrile seizure. We were in town and he was running a small fever. He was prone to ear infections and since we were going into the weekend, I told my husband to go ahead and stop at urgent care so we could have them look at his ears. While in the waiting room at urgent care, he had the seizure. We were very confused because I always thought seizures involved violent convulsing. He wasn’t convulsing at all. He was staring at the ceiling, would not respond and was making horrible gagging sounds. The nurses rushed out to him and then they called for the doctor. The doctor found a mild ear infection and Gunner’s fever had risen to 104 (it had only been 101 when I checked it in the car before we went in). That has been about 6 months ago, and thank God it hasn’t happened again, but I’m super paranoid about fevers now. My friend’s child had one with almost every fever when he was small. Her doctor told her that most will grow out of it by the time they are 5. Only 3 years to go for our boys! I’m so glad Max is OK 🙂
As someone who has been a bit disappointed by the recent smattering of over-the-top posts, THIS one is why I keep coming back.
It is real – and helpful – and brave.
I am so glad Max is okay (though I made it through 3 seconds of that video before I welled up) – and commend you for your strength.
So thank you for this post. Really.
Thank you for sharing this. If something like this happens to my girls, I hope I’m able to remain as calm as y’all did.
This was terrifying for me to watch – I hate that y’all (especially your sweet girl) had to go through something like this! Thank you for sharing the video, as I have never experienced anything like this.
I watched about 30 seconds and tears started welling up in my eyes, you both were so calm and brave! My youngest is his age as well. I’m glad he’s ok and hasn’t any others, thank you for sharing in the hopes that it helps someone else, but I hope nobody has to go through that!
Katie – Thank you for sharing this story and the video! Im sure you didn’t feel calm, but you did such a great job supporting Max! I really appreciate you for sharing such a personal story and video of your sweet boy and I am so thankful that he hasn’t had another one!! xo, darcy
THANK YOU for sharing! After nannying for years I never knew of this, nor experienced this, but I am SO glad you shared. I posted your blog post in a link out to my Facebook friends just to be sure everyone I knew had awareness to come read too. Glad everything turned out okay, but so so scary. Thanks again!
Thank you so much for sharing this information. I cannot imagine how scary this had to be for you and your family.
The video was so difficult to watch but THANK YOU so much for sharing. I would have no idea what to look for or what it looks like. I tend to have the “shake it off” mentality probably more times than I should with my two and this was so very helpful! Glad he’s okay!
Oh my gosh. I cried during that video and reading your post. I’m so sorry you all went through that. How frightening and terrifying that time must have been for you. Prayers coming your way that he (and all your kids!) continue to be healthy and don’t experience this seizure again. Thanks for sharing this so you can help others identify the signs.
This is one of my biggest fears with my boys! Your video made me cry my eyes out but it is SO HELPFUL to have an idea of what it would look like if it happened. It was really hard to watch but I’m glad I did. So glad little Max has been good ever since! Fevers are the worst and always make me super nervous anyway.
I did not watch your video because 32 yrs ago my first child at 14 months old had her first seizure. To this day I remember all of them very clearly. It is something she grew out of, but anytime she was sick, being her fever climbed to fast sometimes she would have a seizure and other times not. Her father had a few seizures when he was a baby. Then my son had two seizures when he was 12 months old. Then that was it. Both of my babies have grown into very healthy young adults with no health issues. My daughter has two children who so far have not had a seizure. I know how your feeling, life is so precious..
This is so scary . . . thank you so much for sharing! I have 2 little girls (1 and almost 4) and I really didn’t know anything about these! Definitely good info to have. I tried to watch the video so I would know what to look for, but I’m at work and started crying and so I had to stop. 🙁 I’m so glad he is okay!!
Oh my goodness! I couldn’t finish the video. It was too close a reminder of my oldest daughter’s febrile seizure. She was about 15 months old and we all were getting sick with the flu. Her temperature spiked one evening and it was like you said, the scariest night of my life! I had never heard of this type of seizure. We just knew that she was getting very hot (even with tylenol in her) and very lethargic. She got a to point of not responding to us very quickly so I called our pediatrician nurse line. While I was dialing, her eyes rolled back in her head and she started salivating at the mouth. I hung up and dialed 911 and the convulsions started. Somewhere in the back of my mind i thought to get her body cooled off so we put her in a lukewarm bath until the paramedics got there. I really thought she was going to die. We spent several hours at the pediatric ER near our house- running tests and doing x rays. Thankfully, it was due to the flu and she’s now 5 years old and it has never happened again.
Thank you so much for sharing this Katie! If I had known what I know now about febrile seizures, it still would have been scary, but at least I would have had some knowledge of what to do. I feel like this information should be given out at hospitals after you have a baby!
A few more things that we were told at the ER-
1- Yes, to the Motrin over Tylenol
2- We were informed that they have no medical records of a child dying or having any long term effects from a febrile seizure. Obviously, you don’t always know the cause of a seizure when its happening, but if it seems to be due to a fever, there is some comfort in that.
3- We were told if it happened again, we do not have to call 911.We can let the seizure run its course and then take the child to the ER ourselves (but always bring them in!). Obviously this is a personal decision and dependent on the situation.
4- We were told if it happens once, it will likely happen again. Its the body’s way of responding and protecting itself from the spike in temperature. Thankfully, this has not been the case with our daughter, but I have friends whose children have had multiple febrile seizures over a year’s time with no underlying reasons except the fever.
I am not a doctor, these are just some things that we learned while at the ER that I wish I had known before. Sorry for the long comment! Thanks for the info, I think its good to get it out there for young moms to know!
You can also layer tylenol and motrin. My daughter had her first seizure at 3 months old. She would have one every time she got a fever until 2 and a half. Girl. I KNOW this. All of this. Everything you wrote, it felt like I could have written it. The same panic, uncertainty, fear, terror, heartbreak…. I will never be able to watch the video of your sweet baby like that, but I know what it looks like. Thankfully my daughter is now 5 and it’s basically a thing of the past (thank you, dear Jesus) and we are just now getting to a point where I don’t want to die when she gets a fever. It was so hard and took so long for me to get my sense of security and normalcy back.
All my peds told me tylenol is every 4 hours, motrin is every 6. You can layer them. So for example, you can give tylenol at 12, then motrin at 2, then tylenol again at 4 (it must always be at least 2 hours apart). That way they always have medicine keeping the fever down, as long as the doctor knows the reason. You don’t want to mask the problem, but if you know it’s a virus or they are on antibiotics for an infection, then it’s a great way to keep the temps down and avoid seizures.
Thank you so much for posting. I was 5 or 6 when my baby sister had a seizure similar to this I remember calling 9-1-1 for my mom and not understanding what was going on. I remember being told she had a seizure but I didn’t ever remember what it looked it but it was exactly like this. It’s not what you except a seizure to look like so its super helpful that you shared this video! So glad little Max is okay! <3
Thank you so much for sharing! I watched with tear filled eyes, but am glad to know what to look for..because I’ve actually never heard of these, nor would have known what was happening. I am expecting baby #3 in just a few weeks, so this is info I’m glad to learn about. Praise the Lord Max’s we’re not something more serious, and again, thank you for sharing!
Watching that video was hard, and broke my heart for you and your little man. I’m sure it wasn’t easy to share, but thank you for doing so, it is helpful to other mama’s like me to be aware. I’ve got a little one who runs high fevers often, so this is always a fear I have in the back of my mind.
So glad he’s not had another one since and is doing well!
My son has a seizure disorder. Totally unrelated to a febrile seizure, but I feel pretty confident in knowing more than I ever want to know about seizures. My son is now 14, but between the ages of 4 and 10, he would have between 2-15 seizures per month; ALWAYS presenting like Max in your video in this post. I think it’s GREAT that you took a video because the side(s) of the body that are affected, the twitching and where it occurs, EVERYTHING is an important clue in diagnosing what caused the seizure. Even more scarier is some children have absence seizures which are sometimes nothing more than staring into space. Which is extremely difficult to be on the lookout for because I know several times, my son would have this going on for a minute or so before I even knew.
Seizures are the scariest sh*t you can imagine and unless you’ve had a child with a seizure, you truly cannot imagine how horrendous it looks. My son typically had seizures for upwards of 30 minutes at times; we ALWAYS had to intervene with mediciation to get them to stop. At the ER the first couple of years and at home with Diastat or a dose of Ativan at home.
Kudos to you for bringing awareness to this scary, horrible occurrence that ANYONE’S child can experience.
Things I wish I would have known about seizures: You mentioned this but it is so important to know that the child’s actual temperature does not cause a febrile seizure. It is caused by how quickly the temperature rises. A child who goes from 100 to 104 in two hours time has a far less chance of having a febrile seizure than a child who goes from 99 to 102 in a few short minutes. It’s the drastic, quick jump in temperature that causes febrile seizures. Seizures themselves do not harm your child. It is the underlying cause of the seizure that may or may not be harmful. Our neurologist has told me many times that while seizures are extremely scary to watch, the seizure itself rarely harms the child. Max’s salmonella or my son’s brain injury is the actual “harmful” part of it all. Seizures that last more than 5 or so minutes are cause to head to the ER. Five minutes sure feels like 5 hours at the time. I think it’s important to reiterate that knowing WHY your child had a seizure is so important. There are causes of seizures in children that are completely without medical reason. And then there are also causes of seizures in children that need to be addressed asap.
I’m sorry you EVER went through this with your child. I wish I NEVER knew a THING about seizures but they consumed my entire life for a number of years. I have never seen any of my 4 children do anything that scared me more than watching my son seize and being unable to do anything to stop them.
Also, I meant to add that every time my son had a seizure, it was a good 48 hours before he was as energetic as he normally is. The exhaustion from even a few minute seizure is intense! But I’ve been told this is also normal after a seizure. I’m sure that after a “mis-fire” in your brain (a seizure), the body has much to recover from.
You did a GREAT job of explaining all this and showing it in a video. Most people have no idea how horrible watching their child have a seizure is, so kudos to you for bringing awareness to it. Lots of people (close friends included!) were terrified of my baby and almost alienated us during those years for fear he would have a seizure in their midst. That really bothered me. So I’m glad you shared this with your large audience. It’s better if people know it can happen to anybody’s child and know how to be prepared if it does!
Been there and I know the feeling. Truly it was the scariest moment of my life. All my hair fell out from stress in the month that followed. Seeing your kids sick is heart-wtentching. Ambulance to ER and my toddler stopped breathing and was unconcious. Thank God they came through it without any lasting effects. I’ve talked to other moms that have been through it, it’s tough. For us, labs were negative so the doctors presumed bacterial infection while traveling overseas (we are military expats so we have to travel, not vacation) but kept us in the hospital for two days just to be safe since they didn’t have a cause. My husband had one as a child too… we are hyper vigilant about fevers. We love the exergen forehead thermometer like the hospital has. There’s a home version that’s amazing!
Katie, I am so sorry you and your family had to go through this. I am a pediatric neurologist so talk to families about this a lot and even though usually the kids are just fine after like Max was (thank goodness!!!) I can’t even imagine how scary it is. Especially since seizures (febrile or not) can look so many different ways and not always the image in people’s minds of what a seizure looks like.
One thing I did want to mention is that I’m worried your pediatrician may have given you outdated information about checking for the tongue blocking the airway. We now know that people can’t swallow or choke on their tongues during seizures, even though sometimes they will make gagging or choking noises because of the seizure’s effects on the muscles in the throat. It can sometimes cause injury to you or the seizing person to put something in their mouth like a finger or a spoon to try to move the tongue so we don’t recommend that anymore. You did exactly the right thing by just keeping him on his side, keeping him protected from anything around him, and getting him checked out.
Thank you for sharing your story to raise awareness and help other families!
So good of you to educate people! We were in a remote area in mountains when my son had his first. His eyes rolled back and he was rigid. I got in the shower with him and we were both fully clothed. I went from singing eenssy weensy spider to saying the Our Father prayer while waiting on the ems people which of course took forever!! He had one more seizure soon after that. The doctors told us that most fevers spike in the middle of the night so parents don’t know their children are ever having seizures. Interesting! My husband traveled and anytime I thought my son might not be feeling so good I would give him advil and sit in a hospital parking lot. It is the scariest thing ever, but know that your child will be okay!!
Thanks for sharing. I always thought seizures involved fanatic shaking so I am very glad to see it. I appreciate you educating the rest of us, knowing what to expect will be invaluable should any of us ever experience this with our own kids. Glad he is fine!!!
Oh.my.goodness!!! No *wonder* it was the scariness day in your life!!! Absolutely awful! But we serve a mighty God. I heard you calling out to him and He heard you. What a blessing. You and Jeremy are excellent parents. That’s why God has given you “arrows”- ❤️
So much love,
Pam~
Thank you for sharing this! My daughter (who is now 17), had a febrile seizure when she was 18 months old. She had a high fever and I put her in a lukewarm bath to cool her off. When I took her to the changing table, her body became super rigid, her face turned blue and contorted, her eyes rolled back and she stopped breathing. Scariest day of my life. If i had known about such a thing, I would have been less frightened. So thank you for sharing!
I am glad this situation resolved itself. My son started having nob febrile seizures at 4 mths and he has not had a day without a seizure in 12 years. I am always glad to hear of happy endings to seizure stories bc I never want another person to go through what we have been through and more importantly what my beautiful son has had to go through for 12 years.
I couldn’t watch the video, because your post read EXACTLY as my experience w/ my 3 year old last December. Easily the scariest day of my life. I have seen my mom handle other people’s seizures in public places before (health care professional who is always the first one there- professional baseball game, shopping mall, whatever, she runs to help), so I kind of knew what to do, but still panicked.
Great post, and thank you for sharing. I wish I had read something like this prior to our experience, but SO MANY parents are reading this now, and since 5-10% of all children have one of these in their lifetime, someone will have read this, and will experience it in the future. Hopefully they can remain more calm than us.
Glad he’s okay, now we have a 10% chance it will happen again – but at least we’ll be better prepared.
Thank you for posting this. I watched the video and had to pick up my 5 month old baby boy off his play mat and hold him during it. Now I know this can happen and what it looks like.
I’m so sorry this happened. I too have a son who had a seizure at 18 months and I still think about it sometimes. Through that experience we learned many of the same things you have documented here, which is great information for other moms and dads reading. My son’s febrile seizure was deemed “atypical complex” so I thought I might add what that means here.
We were told that a typical febrile seizure can last up to 15 minutes (which seems so long to me and I would never wait that long to call 911). Our son seized for at least 45 minutes from the time we realized he was having a seizure in the middle of the night to the time the doctors were able to stop the seizure in the emergency room via medication. I don’t recall him being blue – his body convulsed and he whimpered with each one. Here I would add that it is a good idea to always take your child to the doctor as soon as possible after any seizure because, in our son’s case, his body stopped convulsing just before we reached the ER but his brain continued to seize even after the outward symptoms stopped. He was still unresponsive though so I’m guessing if your child has normal interaction with you after a seizure this wouldn’t be a concern. The protocol of the ER was to administer anti-seizure meds until the patient either stopped seizing or stopped breathing. Our son began losing his respiratory function after about 15 minutes in the ER and so he was intubated.
Try to take mental notes or a video of the episode, because the doctors asked us so many questions like if his eyes were rolled back and if so were they to the left or right? They wanted to know if his arms were drawn up – one or both? I guess these details help them identify what sort of seizure they might be dealing with? Because of the length of time our son seized, the we were sent to children’s hospital to have him tested for neurological disorders, and we spent 3 days there doing every test under the sun. Praise God, everything came back clear and they were able to confirm it was an atypical febrile seizure. He never had another one and he is 9 years old now. Nevertheless, it scared my husband and I so bad that we no longer mess around with fevers in our children or let them ride out anything over 101. Motrin or Tylenol at the ready for us and we have zero reservations using it!
Thanks for sharing your story Katie. I know it will help others.
Oh my goodness. I can’t imagine how frightening those seizures must have been for you to experience. Thank you for sharing the video. I don’t think I would have known what a febrile seizure looks like and I’m thankful to have a reference point in case any of our children experience that one day. Much peace to your family, Katie. So glad to hear Max has not had on-going seizures or repercussions!
Our daughter was sick in December with what we thought was Norovirus. But since nobody else got sick, the doctors thought it probably was not. Anyway, she had received an MMR vaccine a few days earlier, had a quick (albeit violent) virus, possible dehydration due to the vomiting/not wanting to nurse, clingy from being sick. It was a perfect storm. We had moved a mattress into her nursery so my wife could sleep in the room with her the night before. She seemed to be on the mend, so the mattress was being moved out. We placed her in the crib to haul the mattress out, and she got upset. In the time it took us to drag the mattress back to the guest room (45 seconds?), she started to seize. Terrifying. Our cell phones would not dial out (we live in the country, but have a cell extender….talk about great timing for the phones not to work). I had to run to the neighbors’ house and ask them to dial 911, all while wondering if my child was still alive. EMTs initially thought febrile seizure, but we had taken her temperature 5 minutes before and it was normal. Not to say it couldn’t have risen that fast (obviously it could have), but she seemed to be on the tail end of the sickness, and hadn’t had an elevated temperature for a while. My mother’s intuition knew it wasn’t a febrile seizure, and the doctors at the ED thought as much. She was tested for dehydration/electrolyte imbalance. Within normal range. We then thought it could have been the vaccine, but that idea was quashed as well.
We went seven weeks without another seizure. The day of the second seizure she got really upset. It was on the day of the only snow storm in our area last year (again, great timing!). This time there was no fever. Another frantic call to 911 (on the newly installed land line – not digital!). So at the ED she was diagnosed with epilepsy. She’s had an MRI, two EEGs (one that lasted 24 hours), countless Neurology appointments, terrifying blood draws, thousands of dollars in diazepam syringes just in case and several more seizures. Until FINALLY I asked “Could she be making herself so mad, she could cause herself to have a seizure?”. The answer was no, but the neurologist did ask about if she was holding her breath when she was crying. Kind of? She always did some silent crying when she was most upset. Initially we thought when she cried before a seizure that she was upset because she was having an aura (but she was 1, so who knows?). But we think now that she was so upset and crying so hard that she was unable to breathe, then losing consciousness and seizing. Anyway, she’s on an anticonvulsant and an iron supplement and hasn’t had a seizure since starting the iron. We have no proof the iron is the cause of the seizures stopping, of course, but we are lucky that she’s been seizure free for 5 months or so. Epilepsy is common in kids! Who knew?
I am so happy that your son is OK, because it is an utterly terrifying thing to watch. You feel so helpless when it first occurs. And then for me personally, I felt guilty later on for being so upset. I had it put in perspective real quick – walking into the pediatric radiology department of the hospital for her sedated MRI, knowing some of those kids are in there for much, much, worse…made me grateful for what I do have, instead of feeling sorry for what was happening to our family. And to echo what you and countless others have said, it’s so important to remain as calm as possible. Our other daughter still thinks whenever the youngest cries, that she’s going to have another seizure. It is heartbreaking. I’m curious if your other kids know/understand about the seizures, and if so, if you’ve seen any changes in them since?
An acquaintance asked me shortly after the first seizure how we were holding up. So many things were unknown, but I knew I had my daughters and they were OK – AT THAT MOMENT. I said “We’re hanging in there. Some people take their kids to the ED and come home without them, so I feel lucky in that sense”. She looked stunned that I’d say such a thing, but I wondered if she’d ever been in a similar situation, or if she could empathize for people who had been (or worse). And then I felt bad for judging her – I can’t say how I would have reacted to someone saying that to me only weeks earlier. Nothing is promised!
Your video made me cry. I felt your fear and helplessness. You are lucky you have people around you who can give sound advice. Thank you for sharing such a personal moment.
Oh my God. I can’t even watch the whole video. I am bawling. Your courage and strength under that enormous pressure is commendable. God bless that little boy of yours. Thank you so much for sharing.
I just had to thank you for this post and share with you how awesome God’s timing is!
I was watching a friend’s 18-month-old little girl earlier today. She had been running a fever at home and had vomited once shortly before she came to my house. About 3 hours later, I noticed she seemed to be getting another fever but it wasn’t time for another dose of Tylenol yet. She fell asleep and 30 minutes later her mom arrived to pick her up. Maybe 5 minutes later, she began seizing. Because I had read this post and watched the video just a couple of days ago, I knew what was happening and what we needed to do. Because you shared your story, I was able to stay calm and help her mom.
As of right now, the little girl is staying overnight in the hospital while they try to figure out what is causing her fever.
Thank you, again!
I’ve never met someone else who has a child with PFAPA. My son was diagnosed at 2.5 yrs old, after experiencing fevers ever 4 weeks for nearly 2 years. He is 8 now, and has been taking a medication called cimetidine since he was diagnosed. It doesn’t work on every child/case, but for 5.5 years he has taken it 3x/day, every day, and it has reduced his episodes to just a handful per year, and much less severe. Just wanted to share what has worked for him in the hopes it may help you. They say outgrowing it is likely, but we are still waiting for that!
Thank you for sharing this – how terrifying. I hope i never need this info but it’s good to know. And thank you for the thermometer recommendation. The one i have never works consistently so it’s in my cart now.
Wow! Thankful God spared him and gave you the wisdom to do the best thing for him! So so scary! But thank you for sharing so we can all be more educated if it happens to someone near us!
You are sooo brave. THANK YOU for sharing this xoxo
My daughter is 4 and has had 3 febrile seizures. Scariest days of my life. I have wanted to read this ever since you posted it, but couldn’t bring myself to do so until today. Cried through the whole thing. Solidarity sister. Mothering is not for the faint of heart and I am SO thankful that God loves and protects our kids.
Oh mama bear, I cried the whole way through this.
Thank you for raising awareness and sharing.
Much love to you all and praying you never have to experience this again xx
Oh my goodness that gave me chills! How scary that is and I am super proud of you for staying calm and helping her mom….that is so hard…even if you know what to expect. I know your friend is lucky to have you and I hope the little one is on the mend!!!
xo – kb
You explained that spike much better than I could have! Thank you for that!
xo – kb
The oldest two understand slightly. We have been trying to teach them generic awareness when it comes to other kids being hurt…and what to do. But it’s hard at the age where they barely understand.
xo – kb
That’s interesting…thanks for the tip!
xo – kb
thank you for sharing — i honestly thought i kind of knew what a febrile seizure was, but reading this, i realize that i didn’t!
That video made me cry! What a lucky boy to have such sweet, loving parents. Glad everything turned out okay. Thanks for sharing and making me more aware!
That video made me cry! What a lucky boy to have such sweet, loving parents. Glad everything turned out okay. Thanks for sharing and making me more aware!
Great information and important for other moms to see what a febrile seizure can look like in a little one. The video made me tear up as it brought back the day that my 18 year old had his first grand mal seizure last December sitting in the front passenger seat while I was driving. I went to pieces and panicked, so kudos to you for staying so calm! Wishing Max much health. xoxo
Wow, I truly had no idea! Thanks for sharing. And yes, you were so calm, even though I’m sure you thought you were freaking out!! Glad he’s on the mend. Take care!
Ohh Katie, I’m so sorry! I could only stand 1:15 of that video, crying the whole time. Febrile seizures are one of my biggest fears as a parent. This is super helpful and I’m so glad you shared it.
I had read this when you posted it, logged it in the back of my brain and continued on with life. Tonight my youngest son (11 months) had a febrile seizure and thanks to this post, I was aware of what was happening and knew what to do. Just got home from the hospital and will be monitoring him through the night. Thank you Katie for sharing this!
Oh Sarah – how scary! I hope you all get some rest and that your little guy is ok. My heart still skips a beat thinking about other parents going through this!
xo – kb
My 2 1/2yo daughter had a really similar episode a week ago – she had a seizure that looked almost exactly the same as max’s and lasted just under a minute – then had another in the ambulance on the way to the hospital, again, just under a minute. We had no idea what was happening the first time and thought we were losing her right in front of our eyes. They regulated her fever at the hospital and she tested negative for strep and flu. After reading your story, I wish they had tested for more things, rather than just assuming it was a virus. We were on vacation out of state and when we got back home, we saw her pedi and since she had 2 seizures and we’re only assuming she had a virus, they referred us to a pedi neurologist who now wants us to have an eeg. I’ve been freaking out a bit, but seeing your story helps me a little, knowing you went through something so similar and came out with everything being okay in the end (since you figured out his cause of fever).
Thank so much for sharing your story and video – it’s so hard to explain what happened over and over again to people and this is a great way to share what happened, spread awareness and hopefully help someone who may go through this in the future.
Oh how scary. My mama heart hurts for you! I remember how scary it was…and now we are very aware of those little fevers!
xo – kb