Mom Seeking Advice on Febrile Seizures

I had them as child and did grow out of them. Mom had me on phenobarbitol and, when I had a high fever, would put me in a tub of cold water (I remember that happening in the middle of the night).

E.,
My friend's daughter at 3 years old had a febrile seizure and it was soo scary for them. She did not know if her daughter would have lasting effects or more seizures with high fevers in the future. Happily, her daughter does not seem to be effected at all, she has not had another seizure, and it has been over 5 years. But most importantly my friend had to be hyper-vigilant whenever her daughter had a fever. The little girl alway slept with her Mom whenever she had a fever and they religiously did the Tylenol, Ibuprofin cycle to keep her fever in a safe range. There seems to be alot of information about the benenfits of a low grade fever in combating viruses in the body, but I would be very careful if it were my children. Also, she had an ear thermometer and a forehead one and would always do both to determine an average temperature. Anyway, I hope this helps.
K.

It's a VERY SCARY thing when that happens. My daughter had one when she was around 18 months. She was playing then clasped in my arms and went into a 7 minute seizure (average is 3-4 minutes). No apparent reason except for a sudden 105 fever. I called 911, they came,checked her out, and I then took her in to see her dr. A few days later we got a cat scan and it showed no signs of anything wrong. I too was told that she'll either grow out of them or this was an isolated incident. She's 4.5 years old now and we've never had another one. I do tend to go into panic mode when she gets sick and has a fever. It's a scary thing and I would say one of the biggest times I felt completely out of control. Get her checked out more completely even if it's for a peace of mind.

My now-5-year-old had two febrile seizures when she was young. The first time we ended up in ICU for three days! It was so scary! But we found out some things that I hope will help. One is that febrile seizures are absolutely not harmful. Another is that kids grow out of them--mine did. My second child didn't have them and my first only had two and now is just fine. They're also genetic. I had them when I was a kid, my dad had them, and my cousin had them--but I didn't know that at the time--which meant that we had to go through all kinds of scary tests. Anyway, they're caused by sharp changes in body temperature, either up or down, as I understand it, and so the only way to prevent them, manage them, and live with them is whatever you do to prevent and manage fevers. I was a scared, hovering mommy every time either kid had a temperature, of course. I called the Seattle Children's Hospital pediatric nurse consulting line ALL the time! They were really helpful. They're free ###-###-#### and you can call them for any reason if you've got 20 minutes to wait on hold. They have a toll free line but I don't know what it is. I remember that, at the time, the doctor was telling me that it wasn't as scary as it seemed, and in the future it would just be a memory of a weekend in the hospital. I thought she must be nuts. But now, years later, it's just a memory, and the days have gone back to, "Don't hit your sister. Eat your dinner. Put your shoes on." It will be OK. I promise.

E.,

I know how you feel. My son (only child) had one when he was about 13 months old. I heard something through the monitor and went and checked on him and he was having one. I thought he had stopped breathing. It was the most terrible thing to ever happen to me. But, like you said, our dr said it is pretty common and he would grow out of it and probably won't have another one. He is almost 3 and hasn't had another one but I watch him like a hawk whenever he has a fever. It is just their body's way of dealing with the sudden spike in temperature. I know now that if it ever happens again, I just lay him on his side, unrestrict any tight clothes and then keep him comfortable until it passes. I would then call him dr and let her know that he's had another one, but like I said, we haven't had to do it again. Afterward, I learned that many of my siblings children also experienced the same thing but no one had ever said any thing about it before as their kids are all grown now (we are older parents). Hang in there and know she will be ok if it happens again. I know how scary it was and we did call 911 and took him to the hospital the night it happened. So don't think you are overreacting -- because with your own child, there's no such thing. Good luck and know that you're not alone.

R.

Hey Miz E.,

As you can tell by the amount of responses you have here it's quite common, as frightening as that may be.

My son as well had a mild "tremor" at 6 months old the day after his fever broke. His first two front teeth were coming in simultenously and the stress of it all depleted his immune system and we spent the next two and a half days trying to manage his fever. The thing with fevers is that they're important. You don't necessarily want to live in fear of them for years to come. Technicly the fever is the bodies natural immune system response, and it let's you know your lil one is putting forth a good effort to fight off whatever bug they've got, and it'll ensure a quicker recovery.

We took to trying to keep the fever below 102, and keep him in constant care and comfort. Usually only in the evenings did we give him baby liquid tylenol. Medication is really hard on their lil livers so we tried to avoid dosing him to often. Bath's were good for just giving him and ourselves a brake throughout the day. Since i'm still nursing him I took to taking every three hours echinacea,a vitamin C packet, and elderberry cough syrup. In turn he got this medicine from me through the breast milk.

I was so relieved when the fever finally broke,and we had a nice nursing session but at the end of the session he started to convulse. It was this silent terrifying process. I quickly told my Grandmother who is a naturopathic dr. and we live with. She then proceeded to let us know that it was a very common thing, and for us to keep calm and to keep a close eye on him though for the next few days to see if we notice anything strange or wrong. It's been about 2 months and nothing.He's continuing to thrive and amaze me daily.

I think it mainly brought up for me a deep rooted fear of losing my baby or him possibley having to live with a severe disability. Both things I have little to no control over under some circumstances. I've been trying to do some emotional work around these types of fears rather then living at their mercy and whim for the rest of my life. I don't know if you'r a spiritual person but for myself I know I just need to have faith in whatever the future may hold. Even if it's not how I want it or what I want. It's a bit of a tug of war,but relieving to know I don't have to carry this all on my own. Certainly the idea of him leaving this world before me, let alone at a young age,would be a lifetime heavy blow. But for me to try and have a healthy relationship with him,and myself I need to except that although I will always do my best to keep him safe that doesn't necessaraily mean I have control over everything.
Children will catch colds and get fevers, and yes, even sometimes they just might have a"tremor"

In the meanwhile, I recommend taking your lil one to see a cranial osteopath just to help balance anything that might have been stressed for your little one. It's a really gentle noninvasive treatment.Just the cranial osteopath practicioner and their hands.

Bless your heart,and good for you for reaching out.

E.,

I wanted to let you know that I, as a toddler, had two febrile seizures. Mine were tied to the high fever that comes with Roseola. Once my fever broke, I broke out in a rash all over my body, which told the doctors what the problem was.

I just wanted you to know that I never had the febrile seizures again and I'm very healthy. Although, my poor mom still talks about how frightening it was. Anyway, they are relatively common among young children and your little one will no doubt outgrow them and be just fine.

I said a prayer for you guys and I hope you don't have to go through it again! M.

Hi E.,

When my son was 14 months old he also had a febrile seizure. He'd been sick, but hadn't shown much of a fever until he woke up from his nap. He was sitting on my lap and then started to go into convulsions. We put him on the floor and called 911. They came and gave him oxygen and then transported him to the hospital just to be sure. My husband's brother has epilepsy so we were scared it might be something like that. After an EEG a few weeks later everything turned out to be fine. But I've never been so scared in my life. Seeing my little boy convulse on the floor isn't something I will ever forget. Now days at any sign of a fever I give him medication, usually rotating Motrin and Tylenol. Semi-warm baths and cool wash clothes do wonders as well. From what I've read and heard from the doctors, these seizures are pretty common. That doesn't change the fear of another one happening though. I guess what I'm trying to say is just be diligent about heading off a fever when she's sick. I'm still terrified when my son is sick and I think that's something that will always be a part of me. Just know that you're not alone and if you need to chat, just send me a line.

Febrile seizures are soo scary, but obviously very common.
My daughter had one at age 2 after having a sudden fever. We gave her tylenol and she fell asleep on our bed, only to go into a seizure a while later.

I seriously freaked out when she started foaming out of her mouth and turned blue. I called 911 and they took her to the hospital. The next day she got a rash (roseola).

She is completely fine now (age 4) and has never had one since but I am very vigilant about any fevers. We always alternate the tylenol and motrin religiously.

I now have a 7 wk old daughter and am worried about her as well. My husband used to have them when he was young, I guess it runs in families. ??

I'm so sorry that you've had to go through this. I went through this with my son when he was two. It was a terrifying and heartbreaking experience for us. I'm a single mother and the thought of watching my only child go through this burned me so bad inside. I was informed by the doctor that usually first time febrile seizures typically do not last more than 2-3 min. My son? His was over 5. My fear was strong. I watched him like a hawk over the next few months. I was scared it was going to happen again. Hardest part is watching him have his "cold chills" ever since the seizure. I have to constantly keep his hair short because he gets too hot and gets the shakes. I'm still worried that he's going to get another seizure. I don't think he will, but the thought still swims around in my head. He's 5 now and functioning normally. It's still an experience that I wouldn't wish on the worse of worse. The best advice that I can give would be to make sure your child isn't over blanketed and has room to breathe. If they are sick, check on them to make sure that they're not overheated. Keep them cool with a lukewarm washcloth...and don't forget to give them the most important thing of all...your love. :D Hope this helps. :D

In Sept. my son, who was 17th months at the time had a febrile seizure. It was the worst experience I have ever had. As far as I can gather from all the doctors and info online is to just pay very close attention to colds and try to avoid sickness this cold season. Treat the fever before it becomes a fever. So, if your daughter is showing signs of runny nose and crankyness, Motrin would be a good thing. This is what the pediatrician told us. However, I think you should follow your instinct and just be more aware and tuned to possible fevers. I can tell you after the seizure episode, I have become much more sensitive to everything. I hope this is helpful. Also, if you feel the need to talk about it my email is ____@____.com.

My daughter experienced her first and hopefully last febrile seizure when she was 2. (She is now 5.) It occurred when she was sleeping. It was certainly very frightening as anyone who has experienced this can attest to.
From that point forward, I tried to keep her as cool as possible while she slept. Less covers and lighter pajamas. Knowing that it can happen certainly helps. When she does have fever, I respond quickly with lighter clothing and possibly Motrin to keep it down.
I wish I had something more definitive to tell you. Good luck and hopefully you experienced your first and last this weekend.

we had one 36 hours after her second vaccination; I broke up the vaccinations and extended the schedule so it wouldn't cause fevers in the same rate as her growth (vaccinations are 'scheduled' to match the growth rate), so we wouldn't enforce a pattern for her body to learn

we only ever had the one seizure, so no idea if shortcircuiting the vaccine schedule helped or we were just lucky

God bless ... it's not any fun to watch a baby have a seizure : ( ...

I was beyond scared when my daughter had one at about 18 months. I couldn't find my phone so I had a neighbor call 911 and we were transported to the emergency room via the ambulance. It was made worse by the fact that earlier in the day she had eaten a ton of blueberries and had vomited them up about the same time she had the seizure. I had sat her on the bed, went to go get the thermometer and came back into the room to see my baby girl lying in a bluish purple mess completely unresponsive. I am not the kind to medicate first but now I "treat" fevers by giving them Motrin as often as the dosage allows. Though she is now 2 1/2 and hasn't had a another one.

My son has a seizure disorder( which is what they call epilepsy nowadays) and so we treat his fevers as well since obviously both my kids are prone to seizures.

Hi E., so sorry that you and your daughter have had this experience. It is frightening when it occurs and hopefully it won't happen again. My son had a febrile seizure at about 18 months of age (he is almost 25 now and just fine. Only had the one, thank God) When my son had his seizure it was about 2:00 in the morning. He had been sick and I happened to be up with him, rocking and giving him cold juices and water...anything to try to get the fever down. He went into the seizure in my arms and it was truely frightening (although, I cringe to thing that he could have had the seizure in his crib during the night without us knowing about it and who knows what we would have found in the morning.)We called 911 but by the time they arrived the seizure was over and he was a lethargic blob, they gave him oxygen and then we took him to the hospital where they did some additional tests. He was conscious but didn't react to anything, didn't cry or fuss during the procedures at the hospital, he didn't react to anything...I didn't know if he would ever return to "normal". The good news is that he recovered completely and we were lucky that it never happened again. Guess I'm telling you this to let you know that you daughter can return to "normal". As far as how to keep it from happening again. I don't know that there really is a way to completely prevent febrile seizures. Ask your doctor about the best ways to bring the fever down quickly...juices, cold compresses, tepid bath, whatever is needed, and be vigilant when she is sick especially when a fever is involved. Good luck

My son also had a febrile seizure last may at the age of 3 1/2 while he was at preschool, it was truly the scariest phone call to receive. Even though the doctor told us he will be more prone to have another seizure he has not had one since. He's also had fevers a few times and we've been able to manage them with tylenol so it becomes less scary as time passes, although I still get nervous when the phone rings while he's at preschool because of that phone call last May. We were also told at the hospital that febrile seizures are quite common, 1 in 25 kids has one. Since then when we've shared our story with others we've learned that they too had a similar experience or someone they know did. As terrifing as a seizure is it's comforting to know that it is not life threatning. I wish you and your daughter the best.

Hi

My son had a febrile seizure one year ago during which he stopped breathing for a few seconds. We were terrified. The thing about febrile seizures, according to two doctors and a little research we did on our own, is that they are caused by a rapid change in body temperature. Our son was showing no signs of illness before the seizure and his temperature had already gotten very close to normal when the paramedics arrived. We went through a battery of tests (to include MRI, EEG, a 24 hour heart monitor) and found that nothing was medically wrong with him. As such the doctors concluded that it must have been caused by a fever spike. There is no way to really predict that it is going to happen, there is no test to confirm that is what caused the seizure, and there is no way to predict that it is going to happen ever again.

My best advice is try to relax. My poor husband freaks out if our son lays down on the ground to stare at the clouds or while playing he drops to the floor for any reason. Our poor son does not understand that his father is only upset because he is frightened - It is something that can happen to any one and there is no guarantee it will happen again.

Good luck to you, I understand the feelings of fear you are experiencing!

*K

Hi E.,

Here is a powerful antioxidant that is so beneficial to the blood of the body and has been known to help children with febrile seizures. I have read testimonies to how children taking OPC-3 no longer have seizures. I can send some of those testimonies to you if you are interested. Here is a link to the supplement, OPC-3. You can read about it's health benefits, ingredients, frequently asked questions and the science behind it's effectiveness.

http://www.marketamerica.com/kimkalin/index.cfm?action=sh...

A friend of mine has a son who sufferes from seizures mainly brought about by fever and it is such a frightening experience, with time spent in the hospital. His have effected his learning and motor skills. He hasn't had one for a year now and may be outgrowing them finally.

I wish you the best! Take one day at a time.
Kimberly

yes! My son had one back in March when he was 21 months old. talk about the scariest thing I've ever seen in my life. They tell me that making sure that he keeps fever down is very important, but it's not caused by the fever itself. it's caused when the fever suddenly spikes and there's not much you can do to stop that from happening. The good news for me was that it seems to be hereditary. My husband had one when he was little. they said if he only had one than it's mmore likey that our son would only have one, but if he had them more often, than our son would also most likely to be more suseptible to them. I'm not sure if that helps you or not but know that it's better that our children are mostly healthy and do not have epilepsy which could be a lot harder to deal with. most babies that have this happen will only have it once, but i know that it no comfort... hang in there and just make sure you remember to always keep an extra eye on her when she's not feeling well.
take care:)

My daughter had this. It was crazy especially when a lot of doctors didn't know anything about it when she was small.
She would for no reason run a high fever for three days straight and if it spiked to 104 she would have a seizure.
I stayed up with her durring this peroid. I had wash clothes to dabble her and at times I had to set her in the tub. Whatever it took to keep her fever down. Motrin alternated with Tylanol for part of the time. I didn't use it a lot because I didn't want her to build an immune to it. Staying up with her was my only way to assure she didn't have a seizure. She was 6 months old when I noticed her first durring the night. I was warming a bottle for her and when I came back she was having a seizure.
She also devoloped a weird hearing loss and the doctors think it occured from one of the seizures she had. At times she can hardly hear and needs a hearing aide and other times she has no hearing problems.
The meds don't guarentee she won't spike so you can't rely on them. That is why I stayed up with her. After I started this regimin she didn't have another seizure. She out grew it at 6 and half yrs old.
I only found one Doctor who knew anything about it. His daughter had it too. It drove him crazy because he couldn't explain it or stop it.
Hopefully this helps.

Two of my 3 children would have a seizure anytime they had a fever. It was usually a sudden very high fever and before I could even get any tylenol or motrin in them they would have a fever. Usually after that the fever would subside and they would be fine. But, no matter how many times they had a seizure it always was very frightening. The doctors told me that there really isn't a way to prevent them. Even trying to rapidly get the fever down won't stop it. I found this to be true. They also reassured that they would grow out of it. Which they both did. And neither have any lasting effects.

Hi,

Our daughter has them as well. Or I should say has had 4 of them which I have been told is rare. Most kids only get 2. Her's started at 18 months and she got 2 about 2 weeks apart. Then didn't have any until this past summer 2 1\2. We just finished extensive testing at Swedish to make sure that is what they are and that is the case. They only thing you can do is give Motron or Tylenol the second she is willing to take the medicine. Her fever should last about 2 1\2 days. It is a scary ordeal there is no doubt about that but there is not much you can do either.

E.:

I too have a child who has had febrile seizures. I really like the advice from one of the other moms about the antioxidant that helps control seizures, but also keep a close eye on how the seizures are brought on, because my son had febrile seizures from the age of 9 months until last May. He has not had one since, but I can say that I think that stress and climate have had something to do with it.

Also, he continuously had ear, nose and throat problems (tubes and his adnoids taken out). This reduced the fevers, but we to this day dress him lighter than my daughter and if he is running a fever, we put a cold cloth over his head to prevent his temperature from rising too fast. That is key to febrile seizures-keep the fever from rising too fast.

Best wishes. If it continues, definitely take your child to a neurologist as soon as possible, especially if the seizure is not febrile. Demand that you be referred to one and keep on the doctors.

This is what we had to do to find out what kind of seizures they were when they turned from febrile to others.

Best luck.

Kim B.

Hi, my name is L. and I have a 3 year old son. I have never experienced this with him but I raised my sister's kids before I had him. From my experience because all 4 of my sisters kids went through it. Your doctor is right they will grow out of it. The oldest any of them wer when they had a seizure was 4 years old they all stopped at that age. There is nothing you can do to prevent this unless I have never heard of any cures. You just have to have lots of patients and be strong. I hated it everytime, it is scarier then anyone can imagine when it is your flesh and blood and there is nothing you can do. The best thing is to be strong for the kids. They need that stregth and convidence that you have it under control. Just remember the better attitude you have will make them more comfortable. Expecially when they get older and understand but don't understand whats going on they your incouragement and strength will help it pass for them sooner and easier. Even though we know how uneasy it really is to watch your kid go through that. Hope I helped a lttle good luck, stay strong, and god bless.

I too could have written nearly all of these stories. Our daughter had hers last Feb at around 20 months and the poor thing I check her temperature so much now that I actually bought her a doctors kit so she can practice and pretend and get used to it. She had the first one which lead to a hospital ride and then 2 more in the hospital where they had to medically stop them. She didn't even have a high fever so all and no family history that we know of so all of this rare and scare for us. I personally still have a hard time being calm even though I know that she is perfectaly fine (they did several tests and she has no issues at all). We have not had an another since but I know how hard it is. It looks like there are so many of us out there so I hope you can take some help and hope from these posts. I agree that it feels life changing, my very calm husband and I argued about it for weeks. We did go to CPR classes after that and we do keep tylonal dosed and ready for her at school. There were a lot of great warm stories her and it even makes me feel better to hear some of these stories. Like another poster I'm adding my email if you want to talk ____@____.com - I hope you are all healing now.