Yesterday was simultaneously the worst and best day ever. The entire story of how the day unfolded could be told in many ways, all of which would take quite a long time, but I will sum up by saying in short, that Gwyneth had a Febrile Seizure, and it was the scariest thing my husband and I have ever witnessed!
I wanted to provide parents with some information on Febrile Seizures, what they are, and how to cope if one happens to your child. The paramedics and doctors all told us the same thing “they are so much more scary to witness than they are to experience” but that almost seems like cold comfort after seeing the condition of our young daughter yesterday morning.
Febrile seizures occur most commonly in very young children, usually between the ages of one year and six years of age. They usually come on suddenly following the rapid increase in a fever. The fever does not necessarily need to be extremely high, but it is the actual sudden increase that appears to cause them to happen.
There seems to be more instances of Febrile Seizures within families (there are seizures on both sides of our family) and eventually, they are outgrown.
In Gwyneth’s case, she had two “mini-seizures” as I have been calling them, followed later by a massive Febrile Seizure in which she went limp, shook, bubbled and twitched at the mouth, and briefly, stopped breathing and turned blue! It was absolutely horrific to witness, helpless as I waited for the 911 dispatcher to talk us through how to cope until the Paramedics arrived (which was simply to place her in the recovery position until help arrived)
She seems so much better today, after some tests and many hours at the hospital yesterday, accompanied by prayer from concerned family and friends, all of whom I want to thank from the bottom of my heart. I am so very blessed to have such wonderful people in my life. The phone didn’t stop ringing yesterday with offers of help, and prayer. God Bless all of you for that!
I am keeping a close eye on her however, in case this is to happen again. I sure hope not!
If you would like more information on Febrile Seizures, this link might be useful.
I’m very glad to hear she is okay. I saw Stuart’s FB status that he was glad she was okay, and I started to be VERY worried about what awful thing had happened. I sincerely hope that it won’t occur again.
Love you all…
I´m so sorry you had to go through that! How scary! I´m glad your daughter is alright, she should be right at the upper age limit for febrile seizures, am I right? So hopefully you won´t ever have to experience it again.
I really enjoy your blog, by the way. I found it by searching for banana muffin recipes and stayed to read (the muffins are in the oven as we speak, my 2 year old helped me make them). You are going on my feed reader! 😀
weird, i came across your blog whist searching for banana muffin recipes… small world!
glad to know your daughter is alright. i have a 2 1/2 year old son. i had never heard of febrile seizures. thanks for the info!
I suffered from febrile seizures when I was an infant, until the age of about 9. I also had a family history as my Dad has epilepsy. (I do not.)
As you mentioned I grew out of them. I know how scary they were for my parents. When I was an infant we lived in the outports of Newfoundland. The doctors had to be on the phone with the children’s hospital in Boston to find out how to treat me. Because of my condition my parents were able to get back to the “mainland”.
I hope your daughter is doing better.
My son, who just turned 3 had a febrile seizure on Jan.3,2008. I was home with him and my infant when it happened. I was just searching the web to find someone else who had witnessed their child. It was the most horrific thing I have ever seen. My son started to seize in my lap, I called 911 and placed him on the floor on his side. He was pale and foamed at the mouth and seized for about five minutes, then was unconscious, the EMT came into the house and took him out. Like you I felt supported by family and neighbors, but I am still having a hard time. It was the worst thing I have ever see. Thanks for your posting . Thanks for listening.
Thanks for the comments and support all. I agree with Tammy that it was absolutely horrific to watch, and I hope that she never has another one. We honestly believed we were watching our daughter die.
The more I talk to others about it, the more I am finding people who have had these seizures themselves as children, or have witnessed their own children’s seizures.
I think the key is education and awareness. I hope many people read this story, learn from it, and read more about Febrile Seizures from other sources in order to be prepared (if that is possible) in case it ever happens to them.
That is a very scary thing you went through, my daughter had her second febrile seizure it was so scary I wasn’t there for the first one, she was at daycare. Me and my husband didn’t know what was going it was 4:00 am and she was making choking noises. we paniced and drove her our slef to the hospital, we now know to call 911. her seizure lasted 45 minutes and they had to stop it on there own. I have never been so scared in my life. I was aholding all I could keep saying to her was stay with MAMA. She satyed in the hospital for 24 hrs. We now have medicine to stop the sezuires our self and still to call 911. I hope she grows out of them. Now touch her every 2 seconds to make sure she isn’t warm.
Our son had his first febrille seizure @daycare on Feb 22nd that lasted for 3 minutes followed by the next one on Mar 15th when we were in a hotel room out of state which lasted for 20 minutes EMT had to stop the seizure. It was the worst 20 minutes of my life. I hope it never happens again.
I hope your daughter is doing okay- and you too…it is so scary to watch your child go through that…and then there is the constant worrying about if it will happen again! I was searching to find other parents that have been dealing with febrile seizures and came across your site…our 22 month old girl had her first febrile seizure when she was 14 months. Her second was the same night we brought home our newborn baby boy…she was 18 months and she just had her third a week ago. Her first seizure was almost an hour, second was 20 minutes- both requiring medication to stop the seizure. The third seizure lasted 4-5 minutes and we stopped it by cooling her down. My husband had these when he was a child until he grew out of them around the age of 4 or 5. We now have a home plan treatment…when we notice a fever is present (100 or greater) we start phenobarbital. We continue this until the fever is gone…we also use acetaminophen but are unable to use ibuprofen secondary to a possible allergy. I suppose this feels so complicated and draining now because my husband and I are right in the middle of it…praying for the day she grows out of these! I was just looking to see if (and how) other parents are dealing with this…we literally go on lock down when she gets sick and do everything we possibly can (cool cloths, baths, fans, cool rice packs, meds)to prevent seizures…sometimes struggling every 3-4 hours when the acetaminophen starts to wear off…her temps have been as high as 105+ for 100 minutes at a time during the peak period for viral infections. I suppose what I’m looking for is to see how others deal with this and also to let others know they are not alone! No parent wants to see this repeated but being prepared is even more important…educate!
reading this, i could understand how the parents feel wen a seizure is there, how it feels like and how hell breaks up for you seeing your child in the worst condition of his/her life. hope your daughter stays fine always GO BE HER.
my 22 month son had a seizure right wen my wife and I were sitting in the OP of my doctor waiting for our turn to see the doctor. it all statered with my son, we went stiff, shivering hard and convulzing, shaking like a leaf. the doctor took him to the emergency and pushed us out of that area as we were penic. the lips started to go blue and all his body shaking n went stiff. oxygen saturation went 45 percent. the seizure lasted for about 30 minutes and those were hell of a minutes for us. my son was hospitalised for 72 hours under observation.the fever was +105, ibuprofen was given along with other emergency drugs. the cause of the fever was severe infection, CRP test was +91 which according to the doctor should have been -4. now as we are back home I Thank GOD to come for our help and now we keep our son under strict vigil for fever touching him now n then
Hey everyone. I feel your pain. My two year old son had a febrile seizure on New Years Eve and my four year old was there to witness it. I am online searching for any information about any changes in a child after a seizure. I just notice that my son sometimes will jump like he’s scared but their is nothing there scaring him. I can’t explain it to my Doctor cause I think he thinks I’m crazy. He keeps telling me he just had a febrile seizure and that’s all. I understand that but I notice a difference in him since that episode. Is anyone else noticing any changes in their child? I’m going to have a CT Scan done on him just to reassure myself that there is nothing else maybe wrong with him. The doctors did say until he outgrows them he may have a seizure before he even has signs of coming down with a virus. I’m just new to this. No one in my family or husbands family has ever had one. I have really just become a different person since this episode.I pray to God everyday to protect him and all your children. It really is such a terrifying thing to witness. THANK YOU ALL!!!!
Hi DD…my heart is going out to you…my husband and I are different people too (my post is above by Lynn)…but that is not a bad thing…all I can say is do what you need to do to ease your mind and to take care of your children…it’s our responsibility as parents. We had an EEG completed and pediatric neurologist appointments, upcoming naturopath MD and possible immunology consult appointment (to ease our minds that her immune system is functioning properly)…as I said, do what you need to do…as far as the jumping…this is very interesting and similar to what I experienced with my daughter…the same day that she had her first seizure I called my pediatrician’s office and told them that she would “shimmy” occasionally (like a quick chill)…something just didn’t seem right…I brought her into the office and she had a bilateral ear infection…started her on antibiotics that afternoon and she had the seizure around 11pm….on following up with the doctor I mentioned that I believe the “shimmy” was from her neurological system being hypersensitive and it was a precursor/warning sign of the seizure…I didn’t get much of a response- I know what you mean when you say how the doctor looked at you:-) But we know now that when she does this she is probably getting sick and we check her temperature asap…we’ve also noticed other signs if she is getting sick…wanting to nap during non nap times, she says “I bed”, unusually cranky….you know your child the best and if you notice something different investigate…what’s the worst…you find that everything is okay? Does this ‘jumping’ occur only if he’s getting sick? We all hope that a febrile seizure will only happen once…but educate yourself and always be prepared…knowledge is power…you are not alone! …and a final note…we have cried many tears and prayed endless hours too…the Lord is watching over our children and us…know that you will be in our prayers tonight! Take care and hug your kids! Lynn
Just reading all of your responses has made me cry. My son is 19 months now and has had 6 seizures. 2 of which were 4 hours apart and 1 was a complex one(one side convulsing). The neurologist has put him on Clobazam to break the cycle for his seizures. My son has to take it for a full year. Has any of your kids been prescribed this? Side effects don’t seem horrendous but I would like to know that there is at least one family out there for whom this has worked. Right about now I don’t even want the doctor’s word. Rest, tired like all of you checking your kids’ temperature all the time. He sleeps with me and my husband and I must say I check his temperature by forehead check at least 3-4 times each night. I wish parents who’s kids have come out of these seizures also take the time to read/respond to such groups so we can all take a sigh of relief that there is hope.
I am very glad to hear that your daughter is ok. I am also saddened by reading the responses. I understand the fear between the lines in the responses that I am reading. My daughter, Sarah is almost 16 months. She has had two febrile seizures starting when she was about 14 months old. Both at home thank God! One on 4/21/08 and the other on 6/2/08. The doctors keep telling me not to worry, but if you have ever witnessed a seizure of this type you understand the fear. Sarah’s seizures lasted approximately 10 and 6 minutes. However, the first one took approximately 45 minutes for her to come completely out of and become responsive. I actually thought she was dying in my arms in the ambulance and hospital. I set an alarm to be sure I wake up to check her temperature all during the night. I am so afraid that she will have a seizure during the night. I keep thermometers all over the house and we have made it into a game so she doesn’t mind me checking it all the time. We call it Beep Beep! We are scheduled for our first EEG in the near future. The test is more about making me feel more comfortable than her. I hate to put her thru the testing, but I feel compelled to ensure that they can’t find anything else wrong with Sarah. She seems perfectly normal and seems to being doing fine in her development. Please keep us in your prayers as I will keep you and your daughter in mine.
I am so sorry you have had to experience a febrile seizure. My daugher had her first at 11.5 months and I wasn’t sure how long it had lasted as I thought she was sitting watching tv (which she never does) then after about 5 minutes I thought for sure something is wrong as she never leaves me alone that long. I have heard of the seizures but I didn’t know what to do, so I called 911, the paramedics looked at me like I was crazy when they arrived as she looked like just a sleepy baby, and their thermometer wouldn’t fit properly in her ear, so her temp was only reading 36 or 37. I insisted she be taken to the hospital. Once in the ambulance her colour started to changed and her temp started to spike again, we cooled her a bit but while we were waiting in the hospital she started again, and finally the paramedics new something was wrong. The nurse came and took her temp and it was 39.9, and they gave her a large dose of tylenol. The 2nd & 3rd seizure were last week while on vacation. I am comfortable with the seizures as they never last more than the 5 minutes, and although not nice to look at I am thankful they are only febrile seizures. The worst part for me is she will continue to have them as soon as her temp is 39.9 or higher and my doctor has recommended giving tylenol every 4 hours, and motrin every 4 hours to keep the fever down. If I am late giving a dose by even 10 minutes she has a seizure. Her last fever lasted 4.5 days, I am so scared as I am exceeding the dosage of both the tylenol and the motrin (max 4 doses in 24 hours of each, she is getting 6 of each). The other thing that concerns me is we have not found a reason for the fevers. I am also concerned about vaccinations, febrile seizures and autism. My daughter is meeting all milestones so I am following my mothers instincts and foregoing any medical tests and trying to get information from other mothers of children with febrile seizures. I wish everyone all the best in their search for information.
hello everyone.
i just wanted to keep you all updated. on june 16 my son had two more seizures. the doctors told me they were not fever related. this experience was so much more worse than his febrile seizure. he was outside in the extreme heat all day and i think he was overheated and not hydrated enough. not only was it a grand malseizure but he was also vomiting during the scene. thank god my husband was home at the time to pry his mouth open. we turned him to his side and unfortunately had to force his mouth open or he would have choked to death. he nearly bit my husbands fingers off. while in the er the fear of the thunderstorms caused him to have another seizure. the cat scan, eeg (only 20 minutes), and mri all came back normal. they have my son on depakote now. we refuse to keep him on a high dosage just because of the gruesome side effects. i believe that their should be more answers. every side effect my son has from this drug is not supposedly caused by the drug (i know how my son was before being on the meds.)finally being fed up with the medical doctors i have also decided to attempt the holistic approach. the holistic doctor has told me his blood sugars are all not normal because of his pancreas not functioning properly. personally i don’t know if this approach will work either. I just believe that i need to try every approach possible, and most importantly pray. i live everyday of my life fearing another. i stay up almost all night just watching him. every twitch at night i fear is him having a seizure (and he twitches a lot). my mother is constantly yelling at me telling me i’m not trusting god enough. i probably am not at this moment. i wish i could just open my heart enough to him and leave this in his hands, but i am sooo scared. sorry for the long message. if you guys have any information for me please let me know
How terrifying for you 🙁 I will keep your little one in thought and prayer.
Our daughter has not had a seizure for almost a year, and we are so relieved.
I want to assure you all that from what we have learned, while Febrile Seizures are scary to witness, they cause no long term damage to the child.
Grand Mal seizures, I do not know much about.
DD – I hope that your son is going to be alright.
Thanks to all who have shared their stories here.
DD…you will be in our prayers…it’s hard to trust God will carry us through some situations but remember that He loves our children more than we love them (if that seems possible)…you and your family will get through this…ask for help, it may be hard to be on the receiving end but ask…we all go through storms at different times in our lives and your time to help will be at another time…as far as medical care…like you said, you know your son the best…listen to your instincts and search until you are satisfied. Our pediatric neurologist mentioned putting our girl on a daily med and we refused (we use phenobarbital as needed…quite unusual)….keep us posted and may you have some peace of mind…Lynn
Thank you all so much for responding and just listening. It feels so comforting to be able to communicate with others who have experienced the same scenario. Lynn you did the right thing not putting your child on any medication. You feel like your child is not the same after being on it. We have lost that quiet, loving, little boy. Now our son is hyper, and very aggressive. Not only do you have to worry about your child having another seizure, but now you are worrying about the medications adverse affects. Thanks again and God Bless you all.
DD, I am so sorry to hear what has happened to your son, my daughter has febrile seizures-one which was a grand mal, however I can deal with this as it is just febrile seizures-a seizure caused by the rapid increase of body temperature-which has been true in her case for each seizure. However if your son does not have a fever-that is a very different story and you need to do your research and follow your motherly instincts. In Canada we have hospitals which specialize in these areas as the cause of seizures are not easily detected in some children. I believe in god, and I am sure he will be there for you however you need to do everything in your power to ensure your son doesn’t fall between the cracks in the extremely busy medical environment. You may want to start by calling somewhere that deals with special needs children as they often deal with seizures and they usually have some type of family support network to get you in touch with the right people (I am not saying your son is special needs or will be, justs they are usually very knowledgable with medical conditions in children). I wish you all the luck.
Hazel thank you so much for all the suggestions. My husband and I are from Michigan. We were curious to know more information on the hospitals you were talking about that specialize in seizures. Are these specialists general neurologists or are they holistic? If the doctors in Canada can give us more information we are willing to take the trip (you guys are our neighbors)!!! It would be great to find out what the cause is. This has been the most mentally straining incident in my life. My mind is constantly running with thoughts and fears of my baby. I really would love to pinpoint the cause. THANKS AGAIN HAZEL AND EVERYONE ELSE!!! GOD BLESS YOU AND YOUR FAMILIES
im not telling my story to scare the crap out any one but on october 3rd 2004 was one of the worst days of me and my husbands life our little girl which was 11 months old at the time had her very first febrile seizure. and now 4 years later she has had 7 febrile seizures. we heard from our doctor that in some patients they have a pattern and the older they get the more the seizures start to get further apart. which after her 2nd seizure they gave us diastat which is a valium suppository your supposed to inject it if the seizure goes over 5 minutes which we never wait that long.our little girls seizures did have a pattern. at first she would have one every 4 months and then all of a sudden she went 1year and then had one and then 2 weeks later she had another and it repeated itself the year after that. her last seizure which was aug 16th of 2007 was
horrible. the doctors sometimes got on to us for not waiting the full five minutes to administer the diastat so the last seizure we waited and the diastat didnt stop it. so we rushed her to the hospital and they we giving her everything they had for seizures and in extremely high doses and the seizure wasnt stopping. and all that kept running through my head was the doctors always saying that these seizures wouldnt hurt her, but it sure didnt seem that way to me. the doctors made us leave the room because they were on the phone with the closest childrens hospital getting advice on how to stop the seizure because nothing they were doing would help. my sister in law is a nurse and she was back there with her. i was trying to listen through the door because noone was telling us anything. the only person that would say anything was a nurse that was out there with us and all she would say is they are doing everything they can for your little girl. and all of a sudden i heard the doctor say that they were calling in the air vac to fly her to the nearest childrens hospital, and at that time my body went numb, and it started to tingle, i thought i was going to pass out but i knew i couldnt because my little girl needed all the attention she could get. so i sat down and just took deep breaths and finally my sister in law came out of the room an hour and a half later crying and said that we could go back there now. and i turned the corner to where my little girl was and seen her laying there with a vinalator hooked up to her and an io which is a iv that they had to stick into the bone of her leg to get meds to her faster. and after an hour and a half later they finally had stopped the seizure but in order to do that they had to put her into a drug induced coma.i couldnt believe that she had had a seizure that bad all of her other seizures were under 5 minutes. any way the air vac finally got there but we couldnt go with her because there wasnt enough room, there was a doctor and nurses from this childrens hospital who was going to be in there with her. but the hospital was an hour and a half from where we were but. of course the air vac got there before we did . but when we got to the hospital they had her in the pediatric icu and there was a team of doctors there immediatley and they were still acting like it wasnt that big of a deal they kept saying shes going to be just fine. of course she wouldnt be the same for a few weeks since she had so much medicine. a little over 24 hours later me and my hsband was exhausted we hadnt ate or slept alls we could do was stare at her and all of a sudden i seen one little eye open and my heart dropped we were so excited we were yelling for the nurse and every one was so happy. about 12 hours after that they took the venilator off and she was breathing all by herself. a couple of hours later she kept trying to say something to me and finally she got it all out and she said “can i please have a white powdered donut”and i justed laughed and said you can have anything you want but she couldnt till the next day. and finally after 5 days in the hospital we were on our way home. but since she has had so many seizures and since the last one was not fever related they put her on a seizure med called keppra. for the first 6 months after she took the medicine her eyes were a little doppy looking and she didnt talk as clear as she had but they said she would get used to the medicine and she did. it doesnt seem to affect her at all now. she is almost 5 now and in preschool and in tap,tumbling,and ballet and she is 100% normal, a little spoiled but we cant help it.she goes to her pediatric neurologist every 6 months and he says shes perfect. but me and my husband is like everyone else i’ve read about we kiss her head 50 times a day and if she does have a fever our world comes to a complete stop untill she feels better. we feel everyones pain out there and we pray for everyone because it is the scarriest thing in the world. sorry it was so long but once i started i couldnt shut up.
Wow…I stumbled across your site, and I’m glad I did. I just got back from our first trip to the pediatric neurologist. My husband and I have a beautiful boy named Joseph. He had his third febrile seizure on July 6, 2008, in the middle of his 4th birthday party. This was definitly the worst one…it lasted 45 min., and the house was full of people, young and old, to witness it. Thank goodness my older son (a doctor) was home for the party, and could monitor him until the rescue squad arrived. He had his first seizure Dec. 22, 2005, and his 2nd one June 22, 2006. Since they hadn’t reocurred in two years, we thought we were “home safe”.
His seizures occur just prior to a high temperature, and the temperature then follows the onset of the seizure. All three seizures have lead to the discovery of an ear infection once we have arrived at the ER. We never have any warning, but my husband and I spend the better part of our days and nights feeling Joseph’s forehead, and probing him with thermometers. If he has even the slight indication of feeling bad or just a bit of temperature, we immediately start the tylenol/motrin, and have him get back in the bed between us for a few days.
I sympathisize with all you parents out there…it is truly the most horrible thing to go through. All the doctors say he will grow out of it…I hate to wish away time, but in this case…I’m wishing and praying as hard as I can. I hope my son won’t remember any of the worry and anxiety that we are going through…and I hope that one day…maybe 3 or 4 more years from now…I will be able to go to bed and not think about getting up to check Joseph’s temperature. I know I’ll never forget the harrowing minutes that drag by, waiting for medical help to arrive. For parents who have experiencesd this…we will be haunted with those memories forever. Susan V.
I was so happy to find this site, I felt for so long, that this wasnt happening to any other kids- at least not any that I know….My son Vinnie is 17 months old, and just had his 5th febrile seizure- the first 4 were all soooo short (they seemed long at the time)- about 5-7 minutes, and most of the time it happened while his fever was rising, and he also had an ear infection— so, we got tubes, and on Christmas, we were just saying, “WOW, Vinnie has gone over 5 months without a seizure!!!”- then on December 30th he had one, very short, not so bad- temp was around 101- i took him to his ped, and they couldnt find a source of the fever, assumed it was something viral, or possibly teething (which, he was getting about 5 teeth)- so we did the motrin and tylenol thing for about 4 days….then he started being himself again, so we stopped, except for Motrin at night. And, then last Sunday around 7in the monring, he had another one (i had given him Motrin at 6:30am)- and from the time he seemed to be dazed….to throwing up….to seizing on just his left side….to dazed again….so seizing again- it was about 45 minutes,(his temp during this time was 98, taken from his ear) and then the paramedics gave him valuim rectally and that pretty much did the trick—– once we got to Children’s Hospital, in Pittsburgh (we live only 5 mintues away)- they wanted to admitt him and do tests- they did a spinal tap to rule out menengitis, ect…. a CT, EEG(or is it EKG)- and an MRI, all finding nothing- he was FINE! he had temporary paralysis on his right side (which was SO scary) due to the seizure, it all is back to normal now, though- THANK GOD!! they kept him for 2 nights, because he did then spike a temp of 102 and 103, with NO seizure, since he was on anti-seiz med- so that was good- the ped nurologists at Children’s in pgh, are amazing, and since the seizure was one-sided and lasted so long, they just wanted to make sure all was good- they still considered this seizure febrile, stating we could have missed the fever, plus, he eventually got a fever, and they do believe he will grow out of this- but, since he has had so many in only 10 months, they did recommend putting him on Keppra- which, so far so good (it has only been 5 days)- but i have read the side effects can be horrible, so we are holding our breath, crossing our fingers and saying ALOT of prayers!
we were also told, along they way, that these seizure, where “no big deal- just scray to the parents”- but for any of us who have gone through this, it is so horrrible, you can imagine anything worse….i am sorry for each and every family and child that has to go through this- but, I am hopefull that our kids will outgrow this, and thankfull it isnt TOO serious or life-threatening…..
I was wondering if anyone with a child so young (17 mos) has been put on Keppra and how it has worked- i have read and read about keppra, and they have only done studies on kids as young as 4, which scares me….but, i guess i have to trust medicine and these brilliant doctors who want to help my son….
I will keep you all in my prayers…
Lindsay
lindsay,
im glad to hear your little boy is doing good!! my little girl was 3 1/2 when they put her on keppra. she takes 2ml 2times a day and she is now 5. she hasnt had a seizure since they put her on the medicine.(knock on wood) she is the only one i know that is on keppra but so far so good. we havent noticed any change in her since she has been on the medicine. it does hipe her up for about an hour so we try not to give it to her right before bedtime. we still do carry the diastat suppository (which is vallium) with us every where we go just in case she has a seizure we can give her that too and then go to the er. she even has one that is left at preschool with her. so you might want to ask your doctor if you can get that too. i think your doing the right thing by giving him keppra alot of the other meds have much worse side affects they even take away from their IQ which my doctor says keppra wont. try to be strong and we will keep you in our prayers!! let me know how its going!!!
My daughter is 3years 8 months old. She had her first febrile seizure when she was 17 months. She fell asleep on her dad and all of a sudden she was gasping for air. We thought she was choking. We started turning her upside down, hitting her on her back, calling out her name. We called 911 cause she just seemed stiff and her lips were purple. When we got to the hospital we explained what had happened. They transfered us to a children’s hospital for observation. The next day while we were there, I requested her temperature be checked because she felt extremely warm to me. They checked it and said it was normal. I kept telling my husband, how can it be normal she is hot. I layed her on my lap and she started to shake. My husband went and got the nurse. They layed her down on the bed and were walking around so calm. While my husband was yelling is she breathing. It lasted a few minutes. They did all kinds of test and all were normal. Was seen by a team of neurologist while there and they explained to us what febrile seizures were. She had 3 on the same day 4 months later. They lasted about 2 minutes each. So proud of my husband who took care of the situation because I was out of town. 3 months later she had another 3. Had to cancel her 2nd birthday party because that was on her birthday. After that we took her for an EEG – Normal. Doctor gave us Diastat to give her with her first seizure because she gets them in clusters. 1 year 5 months went by without nothing. We were so happy. On Nov.15, 08 she had a very mild one, less than 2 minutes. January 11 she had a 12 minute seizure. It had been so long, that I had forgotten about the Diastat, never crossed my mind. 911 was called and she was kept overnight for observation. Viral Infection. 2 days later took her to her primary doctor and she had strep throat. After reading the stories before me I should be thankful that they only have lasted as long as they have. But, believe me it is the worst thing that I have ever experienced. I found out after the first seizure that I used to get them and I was about 3 1/2 when I had my last one. I just couldn’t understand why after this last one, I was having so much anxiety. I constantly check her temperature and she now sleeps with us. I wake up during the night and touch her forehead and if I’m not sure, I check it with the thermometer. I just feel like I’m constantly worring. My husband is the more layed back and says that she’s going to have them until she outgrows them. Something we have to deal with, but it’s so hard for me. Reading all the articles really made me feel more at ease because I thought I was loosing it with the over doing of checking her. Thank You All So Much For Writing Your Stories. You Have Helped Me More Than I Could Express.
i am so glad to hear that all your kids are fine. My husband and I found our 11 month old daughter in her car seat, her body was limp, her lips were blue and her eyes were rolled back. We took her out and held her up to see if she would respond and nothing so we started cpr. we thought maybe she was choking, all I know is I thought I lost my baby girl and then with my second breath she gasped and tryed breathing but she still wasn’t that responsive. At the hospital they checked her and she had a fever so they then told us she probably had a febrile seizure. they did a ct scan and chest x-ray and all was normal. we are going to bring her to get an eeg but all the doctors keep telling us that febrile seizure are very common and they usually only happen once. But as i am reading all your story’s I am seeing that this doesn’t seem to be the case. I am so afraid it will happen again and perhaps i will be at work and unable to be their for her. the doctors also reassured us that she would have started breathing on her own even without the cpr. Did anyone experience their child not breathing during the seizure or after and the child started to breath on their own?
ang, the first seizure my little girl had we would have swore she wasn’t breathing and she was blue and limp with her eyes rolled back. but the police officer who arrived at our house first said that she was breathing. they said it was a few breaths here and there but we were so nervous and paniced we couldnt tell. not to make you nervous, but im just passing on info that i wish i would have got in the beginning, her doctor also told us that she would probably only have one seizure too. that was her pediatrician, but her pediatric nuerologist told us after her 2nd seizure that if your child has their first seizure after they are 2 they more than likely will only have one. but if they are under the age of 2 their chance of having another one is greater. my little girl was 11 months old with her first one and she has had 7. but now with her keppra and we also carry diastat with us every where we go she is now 5 and in august will be 2 years with no seizures. just please ask your doctor for some diastat, its a valium suppository that you inject when you see the seizure come on. good luck and just remember its okay to kiss her head 50 times a day! let me know how its going!
I am knocking on wood as I write this but I wanted to offer some encouragement. My little boy had his first febrile seizure at the age of 14 months. It lasted about 10 minutes and he came out of it on his own. I am a pediatric ICU nurse so I knew what it was as it occured but that did not make it any less frightening. We went ot the ER where he was diagnosed with an ear infection. He got tubes ~1week later and was fine for a year then had a second that lasted again about 10 minutes. This one was more focal- meaning only to one side. That was chalked up to an unknown virus. His temp lasted only about 2 days. After that one I requested an EEG- which came back abnormal. I found out after that since it was done less than 5 days after the seizure, that might be why. We had an MRI to be sure and it was normal. Then a month later he had 2 febrile seizres 8 hours apart. With that we spent the night in the hospital and he was diagnosed with viral tonsilitis. I elected after that to have his tubes replaced since his first set was working their way out.
With all of his seizures, he has had a temp greaterthan 102 and he has had Tylenol and Motrin on board. This proves that there is not much to do prevent them. I do carry a Diastat but have never had to use one- thank God. It has now been a year seizure free. I just used lots of Purell after being out in public and pray! I have seen several children come through the PICU with febrile seizures but it usually because outlying adult hospitals have freaked out and overloaded the child with seizure meds that decrease the respiratory drive.
My boy is know 3 1/2 and I pray we have seen our last one. I will pray for all of you too!
I am knocking on wood as I write this but I wanted to offer some encouragement. My little boy had his first febrile seizure at the age of 14 months. It lasted about 10 minutes and he came out of it on his own. I am a pediatric ICU nurse so I knew what it was as it occured but that did not make it any less frightening. We went ot the ER where he was diagnosed with an ear infection. He got tubes ~1week later and was fine for a year then had a second that lasted again about 10 minutes. This one was more focal- meaning only to one side. That was chalked up to an unknown virus. His temp lasted only about 2 days. After that one I requested an EEG- which came back abnormal. I found out after that since it was done less than 5 days after the seizure, that might be why. We had an MRI to be sure and it was normal. Then a month later he had 2 febrile seizres 8 hours apart. With that we spent the night in the hospital and he was diagnosed with viral tonsilitis. I elected after that to have his tubes replaced since his first set was working their way out.
With all of his seizures, he has had a temp greater than 102 and he has had Tylenol and Motrin on board. This proves that there is not much to do prevent them. I do carry a Diastat but have never had to use one- thank God. It has now been a year seizure free. I just used lots of Purell after being out in public and pray! I have seen several children come through the PICU with febrile seizures but it usually because outlying adult hospitals have freaked out and overloaded the child with seizure meds that decrease the respiratory drive.
My boy is know 3 1/2 and I pray we have seen our last one. I will pray for all of you too!
Hello everyone. Thank you for sharing your stories. I feel so much better after reading all of them, knowing that I am not alone in this battle. My girl is 16 months old and she had febrile seizure 2 times. The doc advised to her to a EEG scan this week. I am scared of what I might found out. I blame myself for not taking care of her properly when she had fever, I know I shouldn’t be thinking this, but I just couldn’t help it. Thank you for listening.
S,
I feel a bit more at ease reading all of your horrifiying stories
my son Oli is 2 1/2 and just home from is first and hopefully
last febrile seizure! I am still in panic and shock. I was lucky that
it all happened in a walk in clinc while waiting to see doctor.
I was fraystrated to hear all the doctors telling us that this was common
and nothing much to worry about? His seizure lasted 3 min but was
unconscious for an hour. His fever broke the next day while still in hospital. And thank
God he hasn’t and didn’t have another one. He seems alot better now
fever is gone , he had an infection in both ears n throat. The antibiotics seem
to be working. Our doctor says that there’s only a slight chance if this happening again?
So is ther anyone out who’s baby only had this episode once ? God bless all of your
babies and strength to all the parents who are going through ! I will never be the same again.
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We experience a febrile seizure for the first time today. I have a 12 yr old daughter a 10 year old son and a 15month old son. I have never experienced this with my older 2360 and have heard a bit about never did i think i would witness it first hand.
My lil man was having a nap while i got ready for us to go out, he woke up his normal self and i brought him to nanny so i could finish getting ready. Within a few moments my mom said he felt like he had a spiking fever, touched my lips to his forehead and sure enough he was extremely warm. I got the tylenol and gave him some, I went to change my top but ny boots on and went to check on him, his eyes were looking upwards and he seemed to be in a daze. I said to my mom who is a health care professional “mom what’s wring with his eyes” before i knew it his eye brows were twitching (less then 5 minutes after administering tylenol) my mom told me he was having a seizure. Without hesitating i called 911. While on the phone with dispatch his seizure continued, approximately 15 minutes later i heard the sirens if the ambulance and my son started to come to. But was in complete disarray for a couple hours after as though he was lost and confused, he wasn’t talking barely making a sound. All test results at the hospital were fine. No infections or illnesses ..
this was by far the scariest thing i have ever seen or gone through. Mommy panic mode was in full bloom. I hope this will never happen again but according to the doctor because he has already had one chances are he will have another ….