Looking for Other Moms Who Have/had Kids with Febrile Seizures...

Leah - If your daughter is 2 and has had 4 seizures already, she will most likely have a few more. Febrile seizures usually resolve by 6 years old.

My middle son had his 6th and last febrile seizure when he was 5 1/2 years old. At that point, I had been a nurse for 19 years (an ER nurse for 10 of those years), had read everything I could get my hands on about febrile seizures, was pretty sure that my son had grown out of them, and I thought that I had a sophisticated understanding of them.

Well, my husband was camping out-of-state this particular night AND my pediatrician was out-of-town when my son had this last seizure at 1:00 AM. I called my brother, awakening him, yelling at him, and demanding that he come over (he lived several miles away) right now! And bring me a rectal Tylenol from the fridge before he comes upstairs. I called the ER staff doctor where I worked, and kept saying over and over to her, "I know it's OK, just keep telling me it's OK. I know it's OK, just keep telling me it's OK!" (She reassured me, stayed on the phone with me, and I suspect she was rolling her eyes. LOL)

My son has ADHD. I doubt if that's from his febrile seizures, though. I remember reading that about 2% of children with febrile seizures become epileptic as opposed to about 1% of the rest of the population. My numbers may not be exact, but you get the idea. It's double, but still insignificant.

The theory that I'll describe to you is from 15 years ago: I'm not 100% sure that medical "fact" hasn't changed since then because I haven't been reading about febrile seizures recently. (Check with your pediatrician for current theories) The seizure is from the change, the sudden increase in temperature, not from the height of the temperature. So, her routine febrile seizure is likely to be the first sign of an illness that you get!!
So, for instance, if your daughter's temperature suddenly jumps from 98.6 to 100.6 at the beginning of an illness, that's when she's more likely to seize. Once she's in the middle of the illness and has a 102.6 temperature, she's not as likely to seize. Also, I recall that for some reason, once they're in the middle of the illness, they're not likely to seize anyway, even if the fever goes up.

The medication Phenobarbitol raises the seizure threshold. Michael didn't have his seizures often enough for me to warrant putting him on it, although the suggestion was proposed several times by various doctors. I fed him Tylenol and/or ibuprofen whenever he looked at me "crosseyed", though. (LOL) Basically, if I felt a HINT of him getting sick, or coming down with anything, I started giving him Tylenol alternating with ibuprofen to try to prevent the temperature rise from occurring.

Seizures are terrifying to observe.
1) YOU have to RELAX and be in charge when they occur. Nobody else will be calm or in charge.
2) You have to keep her on her side so that her mouth can drain and she doesn't choke on food or saliva.
3) Make sure that the area around her is padded and safe.
4) Put NOTHING in her mouth during the seizure. No spoons or tongue blades.
5) If she turns blue, reposition her head to open up her airway better.
6) Call 911 if she remains blue or her seizure activity continues for several minutes. (Ask your own pediatrician. My pediatrician said 5 minutes.) Usually, they only last 1/2 minute (plus or minus).
6) It's normal to have a "post-ictal" phase after a seizure where the person is out-of-it and drowsy.

I'm familiar with some kids getting hive-type rashes with their fevers, by the way.

It's late at night now, so I'll add on to this note in the next few days. Feel free to write me. I'll try to look up more current information to give you.

leah, i'm right there with you - my two year old son had his third febrile seizure last wednesday during his nap - after the first one, the dr said he probably wouldn't have another - then the same thing after the second - now, they are telling me he is most likely prone to them and it's something i'll probably have to get used to - i've read everything i can get my hands on about it and knew that already but i also insisted that my son be more thoroughly tested just to be safe - they are absolutely terrifying, though and since this last one happened while he was napping i went and bought a video monitor the next day - it has helped my peace of mind for now

i have heard about the tylenol suppositories but i don't quite understand how they could help - like the one lady said, my son's seizures come on because he goes from no fever to a high fever very rapidly and they are the first indication that he is sick - once the seizure is over, his temp starts to go back down on it's own and even if he runs a fever through the rest of his illness, he doesn't seize - so, i don't know how the suppositories would be helpful unless i could miraculously see a seizure coming on somehow - two of the ones my son had i could look back afterwards and see hints that something was "off" with him that day but this last one came completely out of the blue

i know the seizures are supposed to be fairly common and harmless but it's hard to tell yourself that when you have held your child as they seized - i wish i had great advice for you but i don't - the woman who gave the long explanation did a great job with all her information - mostly, i just wanted you to know i understand how rattled and unnerved you are

{{{hugs}}}

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i don't know much about them, but I know my ex son in law, had febrile seizures as a child, so whenever my grandkids get a fever, we give them tylonol right away.
They themselves, ages 2 and 4 have never had one though.
Their father has juvinile diabetes, but I think that is the extent of his health problems, I doubt if that has anything to do with the seizures, since I think they are just caused by sudden high fevers. Sorry not much help, but that is what I know....

Leah your not alone. My daughter was 4months old when she had her first seizure. I was terrified. Rushed her to the hospital and they did all the scans and testing for seizures. Just to come back and tell me that it was brought on from the fever she had. She's seven years old now and hasn't had a seizure for over a year. The best advice I can give is just to watch out when your daughter gets sick. Try not to act scared in front of her when she has one. Best of luck to you, I hope she grows out of them soon.

Hi Leah My son dosen't have febrile seizures. when he was born he had a hole in his Heart Plus Grandmal Seizures& Complet Complex Seizures. We found this all out when he was oly two weeks old. At 5 mounts old he had his heart sugiery After a year he was off his heart meds & his seizure meds. I Just wnat to give you hope that maybe one day she may grow out off it and may only have one every once in a blue moon. My son is now 12 years old. Doing fine for the past 5 years no seizures. And no more health problems other then allergies. a little about me. I'm a 34 year old mom married with one son who 12.

Both my girls had febrile seizures. Febrile seizures are caused when the body temperature rises quickly not a sign they have a high temperature. My oldest has outgrown it at around age 5. I never let her temperature get above 101. at 101 I immediately started the tylenol then four hours later motrin then 4 hours later tylenol etc for the next 24 hours. Even during the night I would wake them and give them medicine. Also you can do a cool bath. I also take a bath with them so the water does not get too cold. YOu want it slightly warm and take a washcloth and rub them down for about 10-20 minutes. The febrile seizures are scary and they DO outgrow it around age 5. It also does not mean your child will have seizures when they are older.

Leah,
When my son had a seizure at age 18 months, I was completely terrified! (and I'm a nurse) I also had febrile seizures as a child. My parents have told me that they tapered off as I got older. I think the last one I had was around age 4. My son is now 9 and has never had another seizure (thank God). I was very diligent about taking his temp frequently when he was sick or even when his cheeks were a little red. If he was 101 or more, I would load him up with Ibuprofen and get him in a luke warm bath. His temp was 104 when he had the seizure. The docs told me that the temp didn't matter as much as how quickly the temp shot up. It is most likely that your daughter will outgrow this.

Good Luck!
P.

I used to have febrile seizures. I only got them when I was ill and had a fever. I am fine. I haven't had any since I was about 7 years old I am now 34. My duaghter has never had them thank God because I know it scared the heck out of my parents.

My daughter has a sseizure every time she gets a growth spurt... just kinda blanks out and collapses wherever she is. Once I understood it it was kinda funny when she was crawling just to see her collapse in place and then get up and keep moving like nothing had happened but now that she bangs into furniture and falls into food....not so funny. Thankfully it doesn't happen nearly as often as before. She's had one (I think) in the last 6 ms. They ARE tapering off it seems....tho she's def had more than four!

Our daughter does have numerous food allergies that require complete quarantine from those foods (and asso'd epi) but no other major probs as far as we know. She did experience night terrors for about a year but they seem to have stopped also.

Hi Leah,

I'll make this short and sweet. You need to detox your house and get all the chemicals out. I had febrile seizures and my oldest did as well. The seizures are terrifying and more and more children have them now and I TRULY believe it's because we expose ourselves to more and more synthetic chemicals. ALL chemicals contraindicate just like meds, and with the number of them on the market, we have no idea what they are doing in our system UNTIL our body tells us with a reaction. (Household mold can have the same effect as chemicals.)If you read the labels on the bottles, it tells you how dangerous they are....

I don't believe there is a "glitch" in the brain that most doctors tell you about. I believe your brain is not supposed to be exposed to what it is being exposed to....

Detoxing can be simple and it can be inexpensive. It's worth it in so many more ways than just this one instance. My family does not get sick anymore, not even a sniffle. If you are at all interested, let me know and I'll do what I can to help.

God bless!

M.
www.squidoo.com/ifyourbabycouldtalk

Hi Leah.
I don't know if you vaccinate, but I would look into pros and cons of vaccinating. Vaccinations have mercury or mercury derivitive, formaldihyde, and other things that just shouldn't be in your body and effect your brain. There are things you can do naturally to detox and help relieve some of the reprocutions of vaccinating. Just a thought. I am not trying to pressure you in anyway. I have so many people in my life who have been affected by vaccinations, I just thought it could be a possibility.
Good luck to you.

hello my oldest son is 21yr he had febrile seizures when he was yonger.but he has cerbal palsy. he cannot walk or talk. sometimes kids have these with the fever and thats the only time they have them.if you are concerned ask the doc to do eeg,to check make sure nothing is wrong. then go from there.i think she will be ok. god bless you

Dear Leah,

Don't worry too much. My son had the Febrile seizures and they are scary, but he outgrew them by the age of three. The last one he had scared us so much. He had a convulsion and I called the parametics. They took him to the hospital and did all kinds of tests and he was fine. The next one scared me so bad. He had a convulsion from fever and his doctor told me to go into the bathroom and run some lukewarm water, more on the slightly cool side and put him in it and let him know what happens. Johnny woke right up. It was from the fever. I just always gave him a tylenol if he was sick, before the fever started and if he didn't feel good I would give him a Tylenol and then check on him a few house later. He did outgrow them and is now 28.

Did you know that chemical sensitivities can sometimes cause seizures in children? Check out www.feingold.org. Feingold is a 30yr old non-profit organization whose purpose is to inform the public about petroleum-based artificial ingredients in our food supply. These harmful additives cause ADD, ADHD, and many other emotional, behavioral and physical side effects includig seizures. Feingold is a leading authority on this subject and has helped thousands of families over the years. Best wishes.

Leah,

I know that same terrifying feeling you described. My daughter is not even two yet and has had three febrile seizures. It doesn't matter how many she's had; they are all scary! The first one happened last year when she was eleven months old. My husband and I freaked out!! We had no idea what to do and put her in the bath (later read that we shouldn't do that). We rushed her to the ER at the local hospital. Thankfully it's only a 10-15 min. drive. It felt like a LIFETIME before we got there. She had already stopped by then. That was THE worst experience I had ever as a parent. After I did my own extensive reasearch and called her pediatrician, I found out that febrile seizures are fairly common. I did read that they are hereditary and my husband had one when he was about her age or a little older. She had her second one last October and her third one last month. Like I said, all were scary, but at least we knew what to do for the previous two and were a little calmer. Like someone else said, I wish I knew when she was beginning to get sick because I'd start administering Tylenol and Motrin right away. Unfortunately, it can come at any moment. That's why we always keep medicine packed her in diaper bag when we go out. We have asked the dr. several times if we need to be concerned about the seizures, and they've said that as long as fever is accompanied, than she should be fine. They did say she should outgrow it by the time she is five. Not too comforting to know (wish it were sooner), but hopefully won't last longer than that. Her fevers have never been higher than 102, but of course, that doesn't matter. Whenever it gets to 99, we start giving her medicine and alternate it as a precaution. She's never had any health problems or anything as a result of them. Knock on wood!

Hi,

My daughter had them under 12 months but has since then outgrown them. My dad and my sister both had them as infants. Apparantly they are hereditary.
My peditrician told me that instead of focusing on the number when she gets a fever to focus on getting motrin in her every 6 hours with tylenol in between (if needed) and I usually wipe her down with a warm rag until her fever breaks. My daughter has a tendency to run high fevers with illnesses and it is scary. The seizure ends up being a result of the body temperature elevating so rapidly. I hate the ER visit as a result of the seizure and all the blood work that is associated with the visit.
Hang in there and hopefully your child will out-grow these soon...

I don't have a child with febrile seizures, but my godson was/is prone to them. He had his first just before he turned 2 and has had 6 since then. My girlfriend's (godson's mother) brother-in-law was prone to them when he was young but only had one, however the doctor told his mother the same as they told my girlfriend. It is common in children under 4 and eventually they should outgrow it. I understand the exhaustion and frustration. It was the scariest thing I ever had to witness, and everytime my godson got sick, we were all nervous wrecks b/c his temp would rise and and a seizure was inevitable. My girlfriend talked to me about it a lot and basically her concern was just keeping her son's temp down when he got sick and that took care of the seizures. This winter he got sick and it was the first time he got sick and did not have a seizure. We are not sure if he has outgrown them, but it feels good to know that he has had his first fever not followed by a seizure. Hopefully with close monitoring and taking all steps necessary to prevent sickness your child will also just outgrow the seizures without complications just as my godson has. I hope this helped put you at ease, even in the slightest.