Shared Experiences / Information on Febrile Seizuires

Hi N.,

On Dec 15th of last year, my four year old son had a seizuires. Same exact experience you described. "unresponsive, gazed stare and not breathing. He soon started turning blue and his teeth were clenched tight and tongue seemed to be swollen, almost "stuck" in his throat, preventing his breathing." we were at my sister's house; she gave him the breath of life while we called 911. He had the same tests your son had. His all came back normal. The only thing that was abnormal for us is he was 3 years old and had his first. Right now, I just really watch when he gets sick. I always make sure i give him Motrin. They told me he could be at risk until age 6. I also got CPR certified through my local Red Cross. The whole thing scared the heck out of me.

Hi N., i too had the same experience with my daughter at age 2 1/2 yrs old now she's almost 5 yrs old. Like your son she had what docs considered a low grade fever around 101 when she had a febrile seizure. And yes they do turn blue, rigid, unable to breathe, foaming at mouth, etc. I also gave her medicine earlier around dinner time when i noticed she had a slight fever, and i checked her again close to midnight when i knew her temp would likely be spiking again. Again it was around 101 so i gave her some med and went to get a pullup for her as she was sick and afraid she'd wet the bed when i thought she was trying to fight me to get it put on but then realized she was blue and convulsing and eyes rolled up in back of her head. I too panicked at first not sure what to do and rolled her over on stomach to clear all the mucus from her mouth which brought the color back to her face once she could breathe again. I also dialed 911 hysterically not sure what had happened because even though she was breathing it was very shallow. My husband arrived from work about the same time as medics who took us by ambulance to the hospital where they also ran a battery of tests which showed nothing. They sent us home finally around 6am and said to treat the fever by stepping the meds between motrin and tylenol to keep fever from spiking. Well by 6:30 am she had another seizure and i called my husband back from work and said we were told to bring her back to the hospital immediately. They ended up admitting her to pediatrics overnight but really found nothing then they set up an EEG at Children's Hopial in Philly which thankfully showed no signs of epilepsy plus no family history. The docs just said we had to monitor her anytime she has a fever because it can occur again but usually they outgrow by age 6. She did have 1 more episode around age 3 1/2 while playing outback in neighbor's yard luckily the neighbor is a nurse and knew what to do but hasn't really had anything since. So i figure we have a little over 1 yr to go and she should be past the age limit, so in the meantime i put it down on all her forms for school or activities just in case it should happen. We also make sure to treat the slightest fever right away so as to not let it get high to cause a seizure. So N. even though i know it's the scariest thing to see your child go through something so horrible!! Unfortunately for the first 2 seizures i was home alone with my daughter and was totally freaked out especially with the 1st one. But you can manage it like i said by checking your child for any signs of a rise in temp and if so immediately give them a dose of motrin to get that fever down. The part that did stump the docs was that my daughters fever was not really considered high for a child but she seized anyways. Usually with febrile seizures it's an extremely high fever or a sudden spike in temp which she had neither. Her temp only raised up a few tenghts of a degree not enought to cause a seizure but they classified it as a febrile seizure anyway. I hope i was able to help N., sorry if i rambled on but they do end up ok. My daughter is now a very energetic, healthy 4 1/2 yr old. She lives a normal life i just really watch her closely as far as fevers are concerned. Oh another thought is while we were at Children's Hopital they gave us a suppository syringe of medicine for us to give to her if a seizure lasted more than 5 minutes. I know what your thinking i said the same to docs " am i supposed to be timing this while my child seizes? " Luckily i've never had to use this and the down side is even if it happens again we couldn't use it unless it was more than 5 minutes. I hope this helps you and your family. And know your not alone in this.

K. F

My youngest son was 13-14months old when he had one(well he had about 10-20 small seizures in a short period).He woke up in the am with a fever but i gave him meds and it came down............
all day he played,ate,drank was fine.It was about 930pm and my husband said to take his temp it was 103.5 and he didn't look right,but still eating and drinking.So my mom watched the other 2 and off to the ER we went.By the time we hit the hospital his fever had reached 104.5 and we took everything off.I was holding him when he seized the first time..he kind of laid back and his eyes rolled into his head.Than after about 5mini ones i handed him to dh and went for help,he had a few more...i was almost taken out by dr's and nurses running down the hallway.We had all kinds of test done and his was caused by an ear infection.
About 2 days after that we took a nap together and when he woke up his lips were blue tinted and he had another high fever but by the time we got him to the dr's he was fine(all this from an ear infection)
I was told he has a higher chance of getting them until he turns 5 but knock on wood he has had high fevers but no seizures.Also anyone can have them...they are caused by a sudden raise in body temp but they are seen more in children(this is what i was told)..........

J.(who just my youngest had seizures but not my older 2,thank god..i couldn't handle anymore of my children having to deal with this)

Hi. I know it must have been very scary, but it sounds exactly like what happened to my nephew. It was playing and then all of a sudden we noticed he was not breathing. He didn't even have a heart beat. It took a few minutes for him to come around and then he was fine. There was no definitive way for the doctors to tell if it was a febrile seizure or a epiletic seizure, but with the presence of a high fever they thought it was probably febrile. The good news is that it will probably never happen again if it was. Good luck.

my son (who is 7 now) had a febrile seizure at 6 months old. i was home by myself with him at the time. he had a fever so gave him the tylenol ( i was not told about the motrin/tylenol thing at that time) and decided to give him a bath to cool him down. while he was in the tub he started making funny short little noises, kinda like he was trying to laugh but not quite. then he started to stare straight up at the ceiling and i could not get him to focus on me at all. i started to get scared and called my dad. when he came up and saw how the baby was acting he called 911 but hung up...they called back, thank God, and came over right away. they explained to me that he was having a febrile siezure because at that point his fever shot up to 104.9. we took him to fitz, who did a spinal tap (the worst thing in the world to watch someone endure) and blood tests to check for spinal meningitis. then they sent us to CHOP to better deal with a baby's needs. they did ad eeg (or ekg , the one where they put the tings on your head to check brain activity) while he was sleeping to see if he was still having siezures-which he was not). turns out it was only a febrile siezure and he had a double ear infection which caused his fever to jump so high. they kept us in there for a week to make sure it wasn't RSV also. not a pleasant experience. from then on, with all my kids, we do the tylenol/motrin exchange and happily it never happened again. but they did warn me that it was possible to have another siezure like that before 4 years of age. they also told me at the peds office, not to hesitate to call 911 even though you just kinda let it ride out on it's own.

My son also had a febrile seizure when he was about 1 1/2 years old. He had a high fever, started panting and then stopped breathing altogether while I was holding him. His eyes rolled back into his head. I think I called the pediatrician first, who instructed me to call 911. I can't remember if I called my husband at work (2.5 miles away) or 911 next. Before you know it my husband was home and the ambulance was there. I think they gave him fluids in the ambulance on the way to the hospital. Halfway there he seemed fine. When we got to the hospital I think they just gave him Tylenol (or something). Nobody paid us much mind for like 1 1/2 hours. Finally we just all went home and that was the end of that. It certainly didn't seem like much of a big deal to anyone but my husband and me! We did take him to a neurologist and all of the tests came back fine. He never had another seizure and he is 12 years old now. Matter of fact, he hasn't really been sick much at all since then. It was very scary and I'm glad it never happened again.

I just read the next response and I guess it can be true. My son is very intelligent. G.

N., my son had a febrile seizure when he was 10 months old. Although it didn't get as bad as you described your experience, it was bad enough. I'll never forget anything about that entire day. If it ever happens again (and yes it most likely will a couple more times before he is six) the important thing to remember is to get them on their side, so they don't choke on any vomit, (this may have been why he was turning blue) also loosen any tight clothing. The seizure normally passes within 5 minutes, and if it doesn't then that is when you call for help. These kinds of seizures are hereditary so you might want to ask your parents or your inlaws if anything ever like that happened to you guys when you were kids. Absolutely no brain damage occurs, in fact, there have been studies that children that have these types of seizures have a higher IQ. (I didn't make that up!) My son's fever was 104.9 POST seizure. The triage nurse said fevers can go as high as 107 before the body starts seizing. Just keep an eye on your son's fevers when he is ill, but also remember you don't want to completely eradicate a fever, for that is the bodies way of fighting an infection. Get some suppositories (FeverAll-they can be used until they are 3 years old) in case your son vomits up the Tylenol or Ibuprofen. I feel for you, N.. I know how scared you and your husband must have been. Take care.

My son has epilepsy and his seizures can be triggered by a fever among other things. The one piece of advice that was given to us by his neurologist is this: when a child is prone to having febrile seizures take action at the FIRST sign of a fever by giving tylenol then two hours later advil then two hours later tylenol and so on and so on. We've had to do this every time he gets sick for fear of a seizure and believe me...I know what it is like having an unconcious child turning blue and feeling the most helpless feeling that you'll ever feel!!! Feel free to contact me for any other info...I know what your going through!

Hi N.,
I haven't personal experienced a febrile seizure, however about 3-4 weeks ago my 2 1/2 yr old son had a fever of 104. I was freaking out, he was having no other symtoms and of course it was in the middle of the night, we did get it to eventually break and the next morning I took him to the doctors because it was the highest he had ever had. It didn't end up turning into anything major, but they did discuss extensively with me about "fever seizures." They said that it is thought to be caused by the rapid increase of the fever, we all know how fast the little ones can spike a fever. It usually happens in kids under 3 and it doesn't have to be a super high fever could be 100 that does it. There is no evidence to show why it happens to some and not others, they think there may be a predisposition or gene for it. Usually (we are at Geisinger) they said their experience shows the worst case children (ones that have a lot of fever seizures) have it in the family somewhere. Since my son didn't actually have one they didn't do the tests, but they prepared me in the case that it does happen, that they would need to see him even if he looked fine after the seizure because you need to do tests to rule out meningitis and encephalitis. Sounds like that was what was done for your son. In most cases, if they have the seizure and go right back to normal afterward then it is a fever seizure, where otherwise if there was an infection it wouldn't be like that. So it sounds like it is a positive diagnosis, but I totally understand the scarey uncertainty of your situation. I remmber I was up all day and night that day with my son just waiting for him to have one of these seizures, so scared about it. I didn't want to put him to bed in fear that I wouldn't see it and be able to attend to it. Anyway, I totally understand you need to go and get him thoroughly checked, that is "mom" all the way. And you know what do it, because your mommy instinct is going to eat you alive if you don't listen. However if the neurologist tells you the same then I would take as an experience. Before you go though try to write down any questions that you have so that you go home feeling educated. Ask them what the best plan is to prepare for another one at another time. And you may want to ask when your son gets another fever if you should automatically give meds every 4-6 hours in order to keep a fever from spiking so quickly, since that is the key timing right there. You can also alternate Mortin and Tylenol and when you do that you can give it to them earlier, like every 2-4 hours. Good luck, take care, and be stronge. This hopefully will be your last experience with this! Make sure you also educate anyone who may take care of your son too. I have always found that being over prepared is so much better than not! Hope all stays perfectly well and happy for you and your family! Jennifer

N., I am so sorry you had to go through that. I can't say that I've been through that exact same experience, however my son had seizures at one week old and I can relate to the helplessness that you must have felt. Fortunately we were able to work with an amazing group of doctors out of Children's Hospital Division of Child Neurology in Pittsburgh. If you are looking for a second opinion I would suggest them. Good luck. My prayers go out to you.

N.,
My son, who is now 2 1/2 years old, has had 3 febrile seizures since he was 1 year old. Twice we went by ambulance to the ER. The seizurs are very scary. Febrile seizure result from a tempature that spikes quickly, not how high their temperature is, but how quickly it goes up. My son would easly go from 99 to 103 in less than a half an hour and then seize. I am now aware of what his pre-siezure behavior is like. He has a low grade fever and is clingy. When he does this I give him Ibuprofen every 4-6 hours and watch him closely. We discovered his his temp spikes were due to ear infections. He showed no typical signs of ear infections such as pulling or playing with his ears. We finally had tubes put in his ears. No fevers or seizures since then! Parise the Lord! Febrile seizures are not common, but not unheard of. They have no long term consequences and have nothing to do with epileptic seizures. If this should happen again, stay calm, place your son on the floor on his side and call 911.
C.

My daughter had a febrile seizure when she was around 1 1/2. It was a Friday night and we were getting ready to leave church. She'd been fine the whole night and was running around with the kids. Then she started acting like she was tired which wasn't surprising since it was after 9 pm. We didn't think anything of it but then on the way out to the car she became unresponsive and was just staring at the lights in the parking lot. We took her to the ER. She vomitted on the way there but was still unresponsive. She eventually started wimpering a little. At the hospital they did all kinds of tests and they monitored her over night before sending us home around 6 am or so. We took her to her pediatrician for a follow up on Monday who was kind of surprised that they suspected a febrile seizure, but I still don't know to this day what she was thinking it could be. Anyway, she had us schedule an EEG at St. Christopher's and everything was fine. She turned 3 in March and hasn't had another one since. If your son did indeed have a febrile seizure, I hope you are lucky enough to have it be the only one. I know it can still happen with my daughter, but she hasn't really had a fever much since then. And we never did the Tylenol/Motrin thing other than for a few days after the seizure. Every other fever we've just handled with Tylenol.

Good Morning,

I am so sorry you have to endure this. My daughter, who is now 7, have 4 or 5 febrile seizures when she was younger. She had her first one when she was 10 months old when she had her first one. We also took her to the emergency room and after a 10 hour wait, we were finally seen. They did all kinds of tests and bloodwork, etc. Febrile seizures are hereditary. I had them as well as my mom. Kids do grow out of them. She got them when her fever would spike. She would get that "look" and we knew immediately what was coming. We would give her Motrin, throw her in a bath tub with luke warm water (I would sit in it with her as well). My husband would run and get her either a slushy or a popsicle to get her fever down. Her fever would spike from regular to 104. You are more than welcome to contact me directly if I can help with anything.

Good Luck!!

Hi, I can relate to your experience. My daughter had a febrile seizure at about 20 months. She was playing with her sister and came over to lay with me to watch tv. Then I noticed her fingers twitching. I turned her over and she was unresponsive. I thought it may be a seizure, but she had been making weird breathing sounds and I wasn't sure if she was choking. Called 911, she started turning blue and the police officer who came first was concerned and expedited the ambulance! I was freaking out. On the way to the hospital, the tech said that she felt warm. She did not come around until we got to the hospital. Then her temp was up to 103. I was told that a sudden spike in fever can cause a febrile seizure. It was the scariest thing, but fortunately, she hasn't had one since--over a year later. I just make sure that she gets Tylenol if I notice her getting sick to keep her temp down. I didn't feel that she needed to see a neurologist, as we were pretty certain it was due to the fever. She was only in the hospital ER for a couple hours and was fine enough to come home. Although I checked her frequently thru the night!

Definitely take a CPR/First Aid class. It will help you feel more prepared. He will probably be fine.

Jen

Make sure you share with your doctor the whole story of what happened when you see him.

As for the turning blue and not breathing... My younger brother did that when we were little. Not in response to a febrile seizure but as a response to pain.

From what you said, I would have thought it more likely that the baby was choking on something (possibly the swollen tongue) or having an allergic reaction to something. I wouldn not have thought febrile seizure BUT I am NOT a doctor just a Mom who has seen a lot between my 3 kids, 3 siblings and 3 little cousins who are now my parents wards (and just a few years older than my own kids). BUT just because I haven't heard about it doesn't mean it isn't true. It just means I get to learn something new.

The tongue swelling was what made me think allergy. That is something that goes along with anaphylactic shock or sometimes slightly less severe reactions than anaphylactic shock. Also, the not breathing can go along with a severe reaction such as anaphylactic shock. But it doesn't sound like your child was treated for that at all which makes me hesitant about it being an allergy.

Anyhow, what I know about febrile seizures is that they occur when your child's temperature shoots up very quickly to a very high temperature. According to the doctor at Children's Hospital who I spoke to, the are usually harmless and don't cause brain damage like other seizures. Once they occur you can usually expect that it is more likely for them to happen again, so you have to watch fevers a little more closely with a child who suffers from them. Also, they usually outgrow them by age 5. My cousin had febrile seizures. Plus I asked about them 3 weeeks ago when my son was at Children's and had a temperture of 104.4.

Anyhow, I hope that this helps you out. My best advice is to talk to your doctors and explain your concerns. They should be able to tell you all that you need to know. If they don't have the answer, ask for a recommendation of someone who can help you. If they doctor can't recommend someone, call you insurance company for a referral. Good luck.

Hi N. ~ I sit with tears in my eyes and chills as I read your post, remembering when my 6 yr. old son had a febrile seizure when he was about 2. It was a Sunday, late in the evening and we were playing, running around the house. At that time he used to lay on the floor until you would tickle him or come get him, I told him to stop faking and get as he was lying completely still. No response! I freaked, we sent our other boys into the room, called 911, my husband put his finger in his mouth to keep his airway open (we now can joke about Greyson trying to bite dads finger off), he layed unmoving/conscious (for what seemed like hours), staring and turning blue in the face. Ambulances arrived, checked all his vitals, his temp at that point was 104! Put him on a back board and we rushed to the er. On the way he started to come around and faintly cry (which got progressively louder & stronger as he came fully around and regained strength). At the er (we had an intern) they did a CAT scan and every blood test they could have. After hours, we saw the resident who looked over his chart and said, oh this was a febrile seizure.
He told us that the chance that this would happen again was higher since he had a seizure already, but it didn't mean he would have another. That we didn't need to call 911, just make sure he didn't hit anything (I wasn't happy with that answer). For a few months I was paranoid, what if it happened at night was especially the worst for me, so sleep was lacking. Happy to say he never did have another seizure (4 boys their have been plenty of other things to keep us on our toes though!!). As far as other postings that say to alternate the meds at the first sign of fever (that was another thing I freaked about, his temp is 99, it's gonna happen again! His seizure/temp. came out of nowhere, no signs of being sick, hadn't been sick. Okay that was another that worried me....boom, out of nowhere this can happen again?! My worries have now subsided, but you won't forget the look on your little when something like this happens. I just wanted to share our experience with you so that you know you're not alone and even though it's not the dr.'s little one and they see it all the time, it is still a scary thing for us moms (yes and dads too!!). My advice would be not to worry about it (hard I know) and enjoy him! Blessings to you and your family ~ J.

Hello N.,
My son a healthy, bright almost 12 year old started having febrile seiures at 15 months. My mom was a nurse so she had (I look back now in hindsight) told me about them. His first one happened in the middle of the night he made a strange noise and when I picked him up he was listless, he was staring at me but could not talk..we immediatly called 911 and my parents and went to the hospital. He was Ok in the abmulance with a low fever I think it was 100. They ran all the test (even tried a spinal tap but my mother stopped them...she said it was to evasive of a test for a baby), eveything came back normal and we left the hospital with the same advice as you got. Unfortunely, we fell into the 1-3, he had another in January and then in March. We did go to CHOP to see a neuroligist, who ran some more tests..all came back normal so we left knowing that everytime he got a fever this might happen which as very scarey. He has 11 seizures in all over the next 4 years, all with no warning and low fever. He never turned blue or stopped breathing though. I used to give him tylenol or motrin every three hours..a little crazy I know but I would chart(T-3:00, M-6:00 etc) it and do this 24 hours straight. It did seem to work but you HAVE to be very careful not to overdose especially since it is very tiring to do. That was advice from a doctor at the time but I am not so sure they would recommend it now. I was alone with him for all but one seizure, his first. As I got more used to them I started to learn what to look for. There are phases pre-eptial..he would stare but I knew he could him me even though he couldn't speak, he would have the seizure which would consist of a minute or so of full body twitching and then post-eptial he would sigh and want to go to sleep. Once or twice he vomited after which they told me is normal, it was his systems getting back to normal. We had many visits to the ER but one of our lasts was very helpful the Doctor had a daughter who had febrile seizures and knew a lot he told us although very scarey they dont cause damage and very few children go on to have epilepsy. He said most children will stop by age 6 but newer research (this was 2001) was saying it can be normal up to age 10. Luckily, he had his last in May of 2001. He has had many fevers since with no problem. One doctor once told me that every fever he has without a seizure is like a stepping stone to him never having them again...I was soo happy for those stones and fevers without seizures. Another piece of information I found interesting is that they are heritery...my father it turns out had 2 as a baby and they believe that is how ours came about and are more common in boys. I realize this is quite a few years ago but hope some of the info might help you. The internet can be great but scarey too so make sure you talk to your doctor also. I hope some of this helps and good luck..I hope your son isn't in that 1-3 but if he is I am sure you will be well prepared.

I had very similar situations and my son turned blue but got his color again pretty quickly when I was on the phone after dialing 911. One of the worst if not worst experiences of my life. I was told the same thing that there are chances of it happening again. At the slightest fever in my kids though, I immediately give them Tylenol to reduce their fever...not taking any chance even you often here that we shouldn't immediately give anything at a small fever since your body is dealing with the infection. To this day, knock on wood, he has not had another seizure. Hope this is the case for any Mom including yourself that has gone through this frightening experience.

My parents told me that I had a convulsion when I was about 18 months old from a high fever which was caused by an ear infection. The same thing happened to me and my mom kept my throat clear until they reached the hospital. I am not totally sure what happened at the hospital but I do know it only happened that one time. I am now 36 years old and do not suffer from any complications due to the convulsion. I hope this helps in some way. Take care.

My experience is not with febrile seizures, but with other seizures. I am wondering if this seizure was after a vaccination. It is not an uncommon side effect and if that is the case, make sure you have the pediatrician report it to VAERS.

If that is thee case you may want to rethink your current vaccination schedule.

Seizures are very scary, and you are correct not to go along with the party line that they are not life threatening. Anytime your child stops breathing, it is life threatening.

Good luck, if I can be of any help, you can contact me at ____@____.com

D.

My friend's little one gets febrile seizures as well. It was quite frightening the first time, but it's not quite as bad now since she knows what to expect. They alternate motrin and tylonol (every 2-3 hours to avoid getting close to the end of the dose and the temp spiking before the 4 or 6 hours is up) at the first sign of illness that might include a fever. During the first one, they thought she had stopped breathing, but afterwards learned that while it was possible, it's more likely that her breathing just became very slow and difficult to detect. She carries some kind of shot with her in case her daughter would have a seizure that lasts longer than 5 minutes (I guess typically they are shorter than that.)

Hi. My son had a febrile seizure when he was one also. I didn't even know what they were at the time and he wasn't sick up until then. He came and laid down with me, that was my only clue that maybe he didn't feel well and within minutes he was going into convulsions. His eyes went back in his head and his breathing was very shallow. As you said, alot of it was a blur, can't remember exactly what else, since I was on the phone with 911 and my husband was holding him. However, the good news is that he is almost six and has never had another one. First sign of a temp though, we give him meds. Good luck...I hope all turns out well for you.

Hi N.

I do not have any children who have had febrile seizures, but am a paramedic who has treated many children with febrile seizures. What I can tell you about my experience with these children are that yes, they can have difficulty or stop breathing while having a seizure. They can have a wide range of seizure activity from their whole body jerking in what is called a grand mal seizure, to blank stares. It is terrifying for Mom's and Dad's and causes the children to behave in many different ways. Once the seizure is over, they go through a period where they may still be unconscious to very groggy and confused, they usually begin crying and are unconsollable for a bit. If it is an older child not in diapers you might notice that they have loss of bladder and bowel control. This is all horribly terrifying for Mom and Dad. My recommendation to you is yes, follow up with a neurologist. If it does happen again, do not put anything in his mouth, do not try to move his tongue - he can not swallow his tongue. If he seems like he is not breathing, it is appropriate to try rescue breathing. The best thing to do is make sure he is safe while the seizure is occurring - on soft ground and isn't somewhere he will fall from (bed, chair). He is small enough you can probably lay him on the carpeted floor and he will be safe there. Do not try to hold him still if he is having a seizure because it can cause inadvertant injury.
Just try to prepare yourself for what may happen again by being as informed as you can about febrile seizures. My understanding is that the only way to actually diagnose febrile seizures is by the child having a seizure with a fever with no other explanation for it. I understand that most children outgrow their febrile seizures by 5 or 6 and have no other neurological issues. It is fairly common and maybe you can find a support group listed online or through your pediatrician's office to talk with other families who have shared this experience. I hope you son is well and that you find the answers you need.