Children with Febrile Seizures

I have a bit of help here. I have a son who also sufferd from this who is now 8 and has not had one in about 5 years. They really are more because of how fast the fever can rise. He would go from fine happy Little man to 106 in no time flat. The frist one we were at the store he was in the cart playing got in the car about 5 mins up the road he was in a full grandma and we got him to the hospital as fast as we could still in it till we were there for about 10 min. I know it is hard when he came out he kept calling for me and I was right there but it was like he didnt understand that Dr said it was normal. It would take time for him to come out all the way. second one not so bad 3rd time was the one that got me, woke up about 7 am and his crib was shakeing he was blue and we dont know how long he was in it for. 20 min for the ambulance to get to us because they kept telling us not to leave just to wait for them. Could have been there faster if I got in the car took him my self. test after teat after test nothing but what you got. so we were told to watch him. My advice and it is the only thing that works trust me I tried everything under the sun. keep lots of tylonal and ibuprohen on hand when you see him acting like he dont feel well keep a eye on the temp the min it starts to go up give him a dose of both at one time then alternate between them to keep it under control.

hi i have had a daughter who now is 29 who had them it is scary but the best thing is and i know it will be hard to do is don't panic get a plastic tougue depresser, wooden ones are fine too but plastic is better. hold him in your arms and put the depressor on his tougue so his tougue dont block his airway and just wait till he comes out of it when he starts chewing on the depressor hes coming out then. so you can take the depressor out. bring his fever down by giving him tylenol and putting him in lukewarm bath. when he is expose to anyone that has a cold or anything give him a dose of tylenol. it won't hurt him as long as you follow the dosage. my daughter was given some meds called phenobarbital. your son won't like it, it taste yucky but it will help to control the seizures. i wouldn't take him to the er every time he has 1 in my opinion it makes them more upset and raises his temp. my daughter did grow out of them the trick is to keep his temp down. when it gets hot outside give him lots of water. dont let him get overheated when it gets nice out. just keep an eye on his temp if his temp goes up bring it down as fast as you can. also watch what his temp is when he goes into a seizure it will help you know what temp to keep it below at. i hope i helped you. it is scary but try to keep calm to help keep your son calm. he will sense it. always keep tylenol and depressor whereever your son goes so you have it at the ready if needed. good luck!!!!

I have a son who was diagnosed w/ that as well. we spent 4 days in the hospital bc of diarrhea as well. Two days in the NICU. It was a horrible ordeal. He also had test after test ran on him and everything came back normal. I was told he would eventually grow out of it but they did give me medication to keep with me at all times in case he should have a seizure more than 8 minutes, instead of running to the ER every time. Or incase we couldn't get to a hospital. Feel free to email my regular account if you would like to chat more about it.

Jenn Lee
____@____.com

I'm just as frustrated as you are, at the lack of a real diagnosis.

My son is 14 yrs old, and had his first seizure last week. His CT was normal, and his labwork was mostly normal. The only problem was a high fasting blood sugar.

He had an EEG yesterday, so I am anxious to find out if we'll get a definitive answer.

It was scary as sh*t when he seized, stopped breathing, turned blue, and I had to do mouth to mouth while friends called 911. And I'm a nurse!!!

you can email me if you wish -- lilyofvalley23 at aol dot com

My good friends' daughter also has febrile seizures. She had her first while they were living pretty far from any real city or hospital so they actually life flighted her to Children's. It appeared that she had stopped breathing, but after evaluation, they decided she really hadn't and it was just really slow. They spent several days/nights in the hospital doing all sorts of tests. She was probably about 18 months with the first seizure. Again, they found nothing so determined that they were febriles. She's had them since, but it's been better since they know what to expect and have some explanation. They now carry a single shot of valum with her at all times in case of a more severe seizure or long lasting one. They haven't needed it yet and hopefully they won't. Perhaps you could ask your Dr about prescribing one for your son in case of another longer seizure episode. My son's got nut allergies and we carry the epipen for emergencies - she basically does the same with this single dose of valum.

The other thing she does to try to avoid/prevent seizures is that she tries to predict possible fevers and acts in advance. Livi's had the seizures even with pretty low temps (at least compared to what my kids have had in the past...up to 105). Livi's have occured as low as 100. Although fevers are your body's way to fight off disease, for kids with febrile's it's clearly a problem to get one. So my friend's doctor has told her to start dosing her alternatively with tylonol and motrin at the first sign of a cold or illness or if she knows that she was exposed and is likely to catch something. You can give the meds every 2 hours if you alternate so that they don't really experience that time towards the end of the cycle when the meds are wearing off and not working as well, but it's too soon to give more. Since they are different chemicals, they can be given on different cycles and alternated which may help control the temp more consistently. You hate to give your child meds unnecessarily, but it's reduced the number/frequency of seizures since she's controled the temperature.

Good luck.

We rushed my daughter to the emergency room when she was about 20 months because she suddenly became unresponsive. By the time we were done there, the diagnosis they gave us was a febrile seizure. Scariest experience I've ever had. It's only happened that one time (she's about to turn 2 this Sunday), but we've been told it can happen again. We make sure we have some Tylenol with us at all times just in case she seems like she's getting a fever. I'm told they out grow them, too, so as long as you keep on top of your son when he's got a fever, you should be ok...at least, that's what I'm told! I hope everything works out and you don't need to go through all of those horrible tests again!

C.,
I don't know what you are going through, the only experiences I have had with twin sons who are 17 months was the one was in the NICU. I remember crying when I saw his IV in his head and I remember crying seeing htem getting shots and blood taken, I can't even imagine what you are going through or how scary it must be. I just wanted to let you know that I am praying for you. I had a spinal tap done in August and I still have back pain and I can't imagine how that poor baby felt. I understand what you are saying because I would be the same way. Just know the tests are for the best to figure out what is going on. I am praying for you and your family!

My oldest daughter had one when she was 11.5 months old. It was one of the scariest things I have gone through with my children. We called 911, and she was taken by ambulance. The paramedics on the way there were able to tell that she was having a seizure. I was told my 2 of them that their children had them, and they were fine. That was the only one that my daughter ever had. Her fever did not even go that high, only like 103, but it came on so quick. After that, when she would start to feel a little warm, I would give her tylenol. She is 2.5 now, and hasn't had one since.

Maybe you gals can help me to my son is 1 year and 5 months old he had his first seziure in April before he turned 1 caused by and upper respiratory infection. Then on his birthday I'm early may he had another caused by supposid shots. OK no biggy, now he had one 2 Mondays ago the er said it was an start of an ear infection and prescribed antibotics, but then we went to the doctor 2 days later she said he didn't have an ear infection. He has a neurologist appointment in December. I guess what I am asking is how do you deal with the anxiety? Also what do you expect and the neurologist? I'm just afraid I am going to lose him. And I constantly can't sleep making the anxiety worse.

Updated

Maybe you gals can help me to my son is 1 year and 5 months old he had his first seziure in April before he turned 1 caused by and upper respiratory infection. Then on his birthday I'm early may he had another caused by supposid shots. OK no biggy, now he had one 2 Mondays ago the er said it was an start of an ear infection and prescribed antibotics, but then we went to the doctor 2 days later she said he didn't have an ear infection. He has a neurologist appointment in December. I guess what I am asking is how do you deal with the anxiety? Also what do you expect and the neurologist? I'm just afraid I am going to lose him. And I constantly can't sleep making the anxiety worse.

Updated

Maybe you gals can help me to my son is 1 year and 5 months old he had his first seziure in April before he turned 1 caused by and upper respiratory infection. Then on his birthday I'm early may he had another caused by supposid shots. OK no biggy, now he had one 2 Mondays ago the er said it was an start of an ear infection and prescribed antibotics, but then we went to the doctor 2 days later she said he didn't have an ear infection. He has a neurologist appointment in December. I guess what I am asking is how do you deal with the anxiety? Also what do you expect and the neurologist? I'm just afraid I am going to lose him. And I constantly can't sleep making the anxiety worse.

Hi C.
I know exactly what you are going through. My daughter also had seizures when she was a baby, although they weren't caused by fevers. She had her first big seizure when she was about four months old, and then was fine for another month before she had another big one. After that she started having them frequently, one or two almost every day. By then we were also beginning to realize that something she had been doing even earlier (about 2 or 3 months old) was actually a mild seizure. Going through all the tests was horrible, and nobody could figure out what was wrong. We ended up taking her to a pediatric neurologist, where she "conveniently" had several large seizures right in the doctor's office. The doctor sent her to the emergency room where they "loaded" her with phenobarbital and gave us a prescription for the same. You may meet a lot of people who don't like phenobarb, but my daughter was fine on it, and never again had a seizure. She took the medicine until she was two, then had another EEG and MRI, which showed everything normal. She's been seizure free for 2 1/2 years, and medication free for 1 1/2 years now.

I remember how hard it was watching my little girl go through all the tests and everything she had to, but she came out of it so well. One of the worst was when they loaded her with medication--she was so small they had to do it through a vein in the top of her head. The EEG and MRI were also nasty to get through. I kept thinking she was going to end up hating her parents for putting her through it all, but of course that didn't happen. We had most of her tests done at a children's hospital in Utah (where we were living at the time) and I remember looking at all the other children who were so much sicker than our own little girl was, and thinking how lucky we were.

I know this is a really scary time for you, and that it's awful having to watch your son go through all of this. The thought that he will probably grow out of it may not be much comfort now while you're getting through the worst of it. I hope you have a good doctor to work with--one that you can ask questions of and express concerns. Feel free to email me if you want to talk--it helps to know someone who's gone through it too.

All the best,
M.

My old boss had this happen with his oldest son. It was scary at first, until they were able to figure out the right dosage for his meds. Once that happened, it was ok. When he got real sick, or had a growth spurt, the seizures would occur again, and they would have to have the dosage reconfigured. His son is 9 now, and I know that it occurs less and less now that he is older. I hope that gives you some piece of mind.

My son is now 9 and he had it the same age your little one did 2 weeks b4 his 1st bday he was actually dead & brought back 2 life I was told by the neurologist I went to that they can grow our of it which my son did I sympathize what your going through my son had the same procedures done spinal tap and all that it was very scary in ICU for a week thank god he grew out of it I hope the same happens for you

H.

Hi C. ~ I saw your posting and remember the horror we felt when our 3rd son had a febrile seizure at about 1.5 yrs. Reading all the baby books we had never heard of such a thing, like you he was fine, running and playing, next laying on the floor, turning blue. We called 911 and were taken to the ER and even at that point his temp was 106! They did all sorts of blood, urine and head scans, then the resident Dr. told us "febrile seizure" and that the probability of it recurring was about 10% and if he did have more he would outgrow them and the older he got the slimmer the chance of getting another. I was paranoid, I would check on him constantly through the night and kept feeling him to see if he was warm. Not being able to tell if he was going to get another was SO hard, since it comes on instantly. Thank God he never had one and it did get easier. He is now a healthy, just about to turn 5 yr. old. I know easier said than done, but hang in there!! Even though this is such a scary thing to see your little one go through,it will get easier! Keeping you and your family in our prayers. J.

Hi C.,

My daughter started at 3yrs .She is now 5. What I did is watch her very closly.And any watching her were instruced to so as well. Any sign that she might not be ok. I gave her tylenol. I had a ice bag with ice and water and would put it on her head. if she still has geeting warm I would give her ibprofen and a cool bath. Made sure that she drank pleanty of water took fast food out of her/our diet and limited her sugar intake. She has been good for a year now. I hope this helps . have strength.May you all be well.-j

HI My oldest son (he's 11 now ) had febrile seizures they are frightening and they do grow out of them usually by age 2 to 3. Everyone has given good advice as to the tylenol and motrin. I preferred advil/motrin because it worked faster and longer. Then a luke warm to cool but not cold bath and then applesauce because the seizure causes them to burn a lot of sugar. AND HERE"S THE GOOD NEWS the siezures do not hurt them they do not know whats going on and do not remember them it is actually their little bodies protecting themselves by ridding itself of the sudden temperature and protecting their brains.
I know its frightening for Mom and Dad but just try to stay as calm as possible everything will be alright.
Good luck with the doc and I hope that it is just febrile and that all will be fine. You are in my family's prayers.

Jess