febrile seizures?

[Jo..]

Caly,

My heart goes out to you and I can't even begin to imagine how terrifying this must have been. I'm glad you got medical attention for her, and that she's home and okay. You are in my thoughts and prayers.

[fortato]

I have no experience in this, but did want to send hugs and wish there were more I could do for you.

I'm glad she's ok. Please keep us updated.


Hugs

Kristne

[KrisM]

In July 05, when DS was almost 15 months, he had a Febrile seizure. It was most definitely the scariest time of my life. Like you, we called 911. The seizure lasted about 5 minutes and his lips were blue and he had a hard time breathing. But, we didn't need to do CPR, thankfully. I can't imagine that!

By the time 911 came, he was done seizing, but was completely limp. He went to the hospital in an ambulance and was seen and had blood taken to rule out things. Eariler in the day, he had a slight fever and just before the seizure it was at least 104, but he was squirming too much for me to get a good read. Never did find out why he had the fever.

Anyway, although he is more likely to have another, now that he has had one, he has never had another even though he's had 2 or 3 fevers since. The only difference in our lives is that I carry a thermometer and Tylenol everywhere and make sure babysitters know where it is. At the first sign of a fever, he gets Tylenol. No more waiting it out.

If you were like me, it's all hitting you now. At the time, I swear I was super MOM. I was calm on the phone to 911 and giving directions to DH. I even thought to ask if I could put him in the carseat for the ambulance ride! But once we were home again with him, I totally lost it. Even now, 1.5 years later, I'm just about in tears thinking about it.

She'll be fine, really. She'll be out of it tomorrow and maybe the next day, but then she'll be fine. You will be soon, too. Hugs to you!!

[jenjenfirenjen]

Big hugs to you. That sounds so scary! I'm so glad you are all home and OK.

If and when you feel like talking about it, I'm just curious if she had a fever (is that the only thing that causes febrile seizures? It's the only thing I've ever heard of causing it.) Our baby had a high fever that we had a hard time getting down and I was so scared of him having a seizure.

I just can't imagine how scary that was for you. Again, big big hugs to you and your baby girl.

[MarisaSF]

First of all, Hugs, Caly! I had the same experience with DD about a year ago and I too saw DD's life flash in front of my eyes.

I am responding to Kris's post because our experience was similar.

Last March, DD was 19 months old. I was in a ski cabin alone with her. I thought at first she was choking because I was feeding her Chex cereal and she stopped responding. I did a finger sweep in her mouth and nothing was there. I thought she had hiccups, but then realized it wasn't her chest "hiccupping," but her whole body (I remember her left leg jerking -- which must have been the seizure.) Her eyes were staring blankly and I realized she felt really hot. I called 911 from the cabin phone. I called DH simultaneously from my cell phone. He was on top of a mountain at the time and I swear he could have won an Olympic medal for skiing and running "home" so fast.

I was scared at first it was something like meningitis and barely held it together for the 911 call, but the dispatcher was very calming and patient. I grabbed a cold towel and wiped down DD with it. After a bit, she started moving, but didn't talk at all. Paramedics came a few minutes later. DH arrived shortly after the paramedics (all he knew at the time was "You need to come home. Jazzy is not responding. I'm on the phone with 911," which is all I got out in the cell phone call). I had never heard of a febrile seizure before, but was told by the paramedics and DH that it could be that.

We went to the emergency room. The doc there was great. Advised us not to do a spinal tap/CT scan/ MRI and that it was likely a febrile seizure. Her temp was 104, I believe, when we got to the hospital. They hydrated her, gave Tylenol (and Advil?) and took a urine sample.

Like Kris, we now keep thermometers and Tylenol and Advil with us whenever we travel and in dedicated places in the house. Babysitters know about the history too. No more waiting it out here either. We were told that there's slightly elevated risk of DD developing epilepsy. We haven't had another seizure since.

Hugs, Mama, I know how scared and drained you must feel now.

[calv]

OMG, I crying reading this, I could have written your post! I'm falling apart. I can't believe i had to put her to bed. I wish I could hold her and keep her up next to me w/me all.night long. DH & I are at each other throats because he didn't see her limp nor does he get it. i have to alternate tylenol and motrin every 3 hours and i'm sure i wont sleep, why bother, I just want to make sure she's ok. and ITA it's the worst thing I've ever witnessed. I'm sorry you've had to go through it.

[MarisaSF]

IIRC, febrile seizures often happen with a fever that spikes really quickly. We didn't know DD had a fever before her seizure. She had been a little "not like herself" -- quiet and cranky, but we chalked that up to her not being used to the cold weather.

DD had no other signs of a virus -- no vomitting or diarrhea. Just a quickly spiking fever.

[calv]

sounds a lot like our story. I also soaked her hair while all this happened and while i was waiting for 911 to show up which felt like HOURS!!! What a feeling it's just awful awful awful!!!!!!!!!!!!!!! God I hope we make it through tonight. I thought I had it together till I just snapped at DH and he snapped it me. He thinks I'm over reacting. $hit he also didn't hold his lifeless daughter. WTF? I know it's stress for all of us but I can't sleep, I just can't get the darn images out of my head.

[KrisM]

Our fever was quite low and he was acting pretty normal, until 15 minutes before the seizure. I had just tried to get his temp and to give him a bath to cool him down. DH came home and then it happened. It was the spikiness.

[tarynsmum]

Oh, my goodness, that is so scary! I'm so glad you guys are home safely (at least for the most part). I can't imagine what that was like, the thought brings tears to my eyes. We'll be thinking of your family and keeping you (and your DD) in our prayers.

[KrisM]

I will warn you that the next few times she gets a fever, you won't sleep. At all. We took his temp every hour and kept checking him all night that next time. We're a bit better now, but seriously watch him. At least they grow out of it by age 5 or so.

Also, after DS's, I learned that my brother and DH's brother had 1 each when they were young. Neither ever had a 2nd.

[megs4413]

no experience just big big big HUGS! i can't imagine what you've been through today and if i were you i'd be drowning my sorrows in ice cream.

[MarisaSF]

I sent this out as an email to mama friends last year. Thought it might help others.

What I learned:
-Know CPR. I don’t have the moves memorized. I have the cheat sheet in our home, but that does me little good on the road.
-Always know the address of where you are staying. I had no idea. I knew the road and the number of our unit. Thank goodness it’s a small town.
-Have a land line in the home. DH and I were considering not getting one since we pay for cell phone minutes we don’t use. Cell phones dial some other 911 line. I called my cell phone 911 several years ago and got something like “all lines are busy, please call again.� With the land line, the dispatcher could detect exactly where I was located.
-Always travel with a basic medical kit. I will never travel again without a thermometer.

From http://www.ninds.nih.gov/disorders/febrile...le_seizures.htm
Febrile seizures are convulsions brought on by a fever in infants or small children. During a febrile seizure, a child often loses consciousness and shakes, moving limbs on both sides of the body. Although they can be frightening to parents, the vast majority of febrile seizures are harmless.

[ShanaMama]

Caly, I am so sorry you went thru that.
Although I have no experience with seizures, I can relate to seeing your baby limp & lifeless. DD had breath holding spells, causing herself to faint when she cried too hysterically.
I will never forget the image of her lifeless body (actually she was stiff, not limp) in my arms & on the floor on a different occasion.
I don't think you'll ever forget the experience, but the freak out factor will lessen within a few days. Like you said, her whole life just flashes before your eyes. It's over 6 months since our episodes, but I am getting chills typing this.
Sending you hugs, warm wishes, good health to DD & some understanding vibes to your DH!

[mamalou]

Caly, hugs to you.

To all of you who have been through this, I'm so sorry! It sounds terrifying and no mom should have to experience it.

MarisaSF, thanks for the helpful info.

[calv]

has anyone gone through this? I need someone to calm me down!!! Today just before 2pm I saw my childs life flash in front of my eyes. Something I NEVER want to experience again or wish on my worst enemy. I have very little energy and I can hardly talk about it, never mind type it out. We believe our DD had a seizure. After spending over 5 hours at the hospital, we're all home and doing as best we can.

Does anyone know anything about this or have you gone through it? I appreciate your thoughts and prayers. I swear I was loosing my baby girl as she was limp in my arms and I attempted CPR on her tiny little body. I'm a mess as I type this and can't even imagined what would have happened had I not called 911. It was so so so damn scary!!!!!!!!!

[DDowning]

My experience was pretty similiar to PP's. Ours happened about two weeks prior to christmas when DS was 2.5. He wasn't feeling well that day and I had been given him tylenol. DH came home and laid with him on the couch for a bit. I think DH's body heat set something off because about 20 minutes later, DH went up to get something to eat and prepare dinner for DS. I started calling to DS to come eat and he wasn't responsive. He had this far off look in his eyes. We realized something wasn't right and went to pick him up that's when he started spasms and his eyes rolled in the back of his head. It freaked us both out. I got on the phone with 911 and DH started taking his clothes off and putting a damp rag on his body to try and bring the fever down. The paramedics were there in less than 5 minutes and he started to come out of it and went to sleep. He got a ride to the hospital and after several hours was able to come back home. They've instructed us now at the first sign of fever to give a combo dose of both tylenol and motrin as a precaution. He hasn't had one since but its an experience I sure as heck don't want to repeat.

[Marisa6826]

I remember how terrified I was when Mia choked on a cut grape (obviously wasn't cut small enough!). She was blue, and I was beating on her like a rag doll to get her to spit it up. I was about two seconds from calling 911. Somebody was definitely looking over us that day, since I happened to be standing right in front of her when it happened, rather than across the kitchen, or getting the mail. I broke down afterward, and had the shakes for the rest of the night thinking about how our lives could have fallen apart in a split second.

Thank God she's OK and kudos to you for keeping it together.

Keep us posted on how she is.

BIG hugs!

-m

[smilequeen]

Simon had one when he was 16 months old. It really was the scariest thing I've been through. There was a part of me that knew what was going on and part of me that was scared to death. I also called 911 sobbing and we ended up spending the night in the hospital (not because of the seizure but for IV fluids).

All of the doctors we saw were very reassuring that while scary as heck, febrile seizures are pretty harmless. We were told to keep on top of fevers but that his chances of having another were only slightly higher than the chances of having the first. He has not had another.

[mapg]

My oldest (now 11) had a couple when she was little. It was so frightening. I do remember someone telling me the seizure is a protective measure the brain takes when the fever spikes so quickly that the body can't adjust. So instead of viewing this as a bad thing, that doc's approach was that this was okay under the circumstances. Does that make any sense? It made me feel better at the time. Some kids seem to run higher fevers than others, Katie never ran anything less than 101. If she was going to run a fever, she jumped from normal to 101, and skipped everything in between. I had just checked her temp and the ear thermostat gave me an error reading that I later learned meant rising too fast to read, I can't tell you what the seizure looked like, because what I remember was the post febrile limpness. My ped said most people miss the seizure because it is so short, but they come in on the post febrile part and freak out. It will happen again probably, but you know what it is now. I tried not to let a fever come up if she was sick. I thought cool cloths on the head and pressure point combined with tylenol helped. A cool bath was another suggestion. Watch the covers and clothes. Just as an aside, a friend who is a doctor and old enough to remember the aspirin days, told me these seizures were almost unheard of when baby aspirin was used, but the number spiked after the Reys syndrome link was made and people started using tylenol.
Sorry this happened-- oh and watch vaccinations, especially the toddler ones, maybe the next to last and last round before school. Seems like those were the bad ones and the fever came on the 2nd to 3rd day after the shot. Katie had a high fever and seizure on one of those but I can't remember which one. I wish you knew me well enough to know what a nervous nellie I am about my kids, that way you would know that you would be relaxed enough about this one day to not be real clear on the details.
MA

[karolyp]

Hugs Caly, my heart goes out to you during that terrifying time and your little one will be in my thoughts and prayers.

Several years ago, I went through a seizure with my niece-in-law, who was about 1 back then and was visiting my IL's house, and now is a bubbly 9 yo. At the time she was sick but it was nothing major and it wasn't stopping her from crawling all over my IL's house. Nobody was even paying her attention as she crawled up and down a long hallway (one of her favorite things to do back then lol). But as I passed by her one time, I noticed her butt was in the air and her nose was burried in the ground and she was rocking back in forth on her hands and knees in a strange way. I saw it and stepped over her to continue on, but the strangest thing happened and my gut feeling told me to turn around and look at her as something was not right. Sure enough, as I turned her over, her eyes rolled back into her head and her lips were blue. I screamed and grabbed her and ran to where the rest of the family was, my MIL performed CPR as I dialed 911. Anyhow, she stayed in the hospital for a few days for monitoring and was diagnosed as having a febrile seizure becuase that cold spiked a sudden temp increase and caused the seizure, but the image of her eyes and lips will be with me forever.

Anyhow, more hugs to you mama. Please take it easy and take care (easier said than done I know). I'll be praying for a speedy recovery for all of you.

[newnana]

I can't imagine how scary that was. Thank you all for sharing your stories and educating those of us who haven't been through this.

Caly, of course you can't sleep. Yes it is a huge deal. Even not seeing it I can't imagine why DH isn't sympathetic. My DH likes to try to "fix" things. He's not handy mind you, I mean situations. When he can't offer a solution or I'm unwilling to listen, he gets snappy. Since he didn't see the seizure and doesn't see anything that needs "fixing" maybe that's what your DH is doing too? I don't know. I'm so glad you are all home and on the mend. We'll be thinking about you.

Michelle

[infocrazy]

FWIW I had quite a few febrile seizures as a toddler. Probably 4 between 1 and 2. My mom of course told me about them since I don't remember them. The doctors put me on a medication to prevent seizures, only because of the frequency and because it was 30 years ago, which I stayed on until I was 5. My brother had just 1 and he was never put on medication. I haven't had one since and I had NO effects from them.

My ped says they aren't hereditary but I follow the same fever protocal with DS just in case.

Sounds like you are a great mama!

[jamierush]

I know how incredibly scary a febrile seizure is to watch in your baby's. My 3.5 yo DD has had 7 of them (started at 11 months) that we know of and have seen. We suspect that she had 1-2 before we actually saw the first one. She never has gotten sick a stomach bug, diahrera, throwing up or anything like that but just always gets fevers when she gets anything viral.

Febrile seizures are not just how high the fever is, but also triggered by how quickly the temp rises.

They are so scary to watch, and I will admitt that I lose it when they happen and DH is the one who stays calm, although I have gotten better the last 2 times because I was alone. I remember the doctor saying to me " they are harder on the parents to watch than they are on teh babies, if indead it is febrile seizures." I wanted to slap him, but after dealing with them for the last 3 years, I have gotten so much better about them. In fact we don't go to teh ER for them anymore, just check in with our Ped on call and make a visit the next morning. Now for the first 3 or so we called 911 and went to the ER.

I don't say that to minimize your fear, but more to provide some comfort from someone who has BTDT. I just got tired of going to the ER for 4-5 hours to get tylenol.

We have done 2 sets of Nueo visits over the years along with sleep deprived EEG's and CT scans just to ensure that they are febrile and not something else.

One thing that happens to Avery, just so you can be prepared is that she gets something called Todd's Paralysis for about 10-20 minutes where one side of her body is limp and unresponsive.

We have been seizure free for the last 11 months or so , so I am hoping that she has grown out ofthem.

Here are some tipes that others have mentioned:

Always have access to Motrin or Tylenol, we give motrin first.

At the first sign of fever, even lowgrade we dose with meds. Th

Seizure most often happen in teh first 24 hours of a viral illness or ear infection, so we dose for 24-36 hours regardless of if she has a fever.

If you see a seizure lay your child out, so not hold the head,but tilt it to the side or lay them on the side. You need to expect some bubbles or liquid pooling or draining from the mouth.

get a cool, not cold wet wash cloth and put it on her stomach and on the head to start cooling her body temp down. After the seizure, lift up her shirt and try to take her pants off if appropriate. As much as you want to hold her just lay next to her on the bed or floor. If you hold or cuddle her your body temp will keep hers form going down quickly.

We do not do cool baths as she had a second seizure in one illness in the bath tub and that freaked me out more of a fear of drowning. In fact honestly we don't let her get in the bathtub while she is running a fever, although the last 6 months I have been more leinent in that.

Make sure that ANYONE who watches your child knows about the febrile seizures and how to handle one.

Get used to doing rectal tempatures, do not rely on under arm, ear or temperal ones, you really need to be monitoring her core temp, at least for the next 6-12 months.

Last but not least, recognize your fear if one happens but keep in teh back of your mind what the doctors say, " This is harder for me to watch than it is on your sweet baby" I had to keep saying that over and over for the last 3 years. Harder to do than to say, trust me I know.

Last but not least, we noticed after a few of them that Avery would wake up and say that spiders or bugs would be crawling on her, I think that she may have been having dreams or flashbacks about the seizures. Those dreams stopped about 6 months ago.

I hope your sweet baby never has another one, but of the 6% of children who have 1 febrile seizures, there are some that continue to have them even if you take the many precautions.

I hope that you get some peace after going thru this experience. I know it took me a long time.

[TraciG]

That is so scary I'm so sorry you went through this, I hope she will be ok !

[wencit]

Oh my gosh, I'm so sorry you experienced something like that. I hope your DD is feeling better soon.

Thanks to all the other posters who have talked about their experiences. I have learned a lot from this thread!

[MarisaSF]

How are you and DD and DH today, Caly? Thinking of you!

[calv]

Am I going crazy where did posts 9-12 go? ODD.

Anyway we went to the DR this morning and honestly I dont feel better. I guess it's the newness and anxiety of it all. I hate the thought of this ever happening again but just pray and hope that she'll be ok. I got through it yesterday adn like I said before I don't wish this on ANYONE, ever.

A HUGE thanks to everyone who's taken the time to reply. You're all amazing and if this post educated 1 person, that's a huge sigh of relieft to me. Before yesterday I've never heard or known of these type of seizures. VERY SCARY but hopefully it really is true that it's worse for the people who witness it vs. the person going through it. THANKS again for your kind words, support and the fact that you took the time to read and reply. This is a wonderful community.

My daughter is sleeping and seems to be doing ok. I guess our PEDI suggested to just stick w/tyelnol for the time being since it's easier on the tummy vs. alternating every 3 hrs tylenol/motrin. For now she's been getting Tylenol every 4 hours and is napping at the moment.

[calv]

sorry but DUPLICATE

[ShanaMama]

>Am I going crazy where did posts 9-12 go? ODD.

Your reply (post 8) posted 4 times. I believe Marissa deleted them as duplicates. (See her poll above).
I'm glad DD is doing better & I hope you recover as well. Give yourself time- as you said, this isn't something you'd want anyone to go thru.

[californiagirl]

DD had a febrile seizure (a small one) when she was under a year. We took her to the Dr. (it wasn't as impressive a seizure, no turning blue or anything, both DH and I have dealt with people with epilepsy and know a seizure when we see one). Because it was a small seizure, everybody we dealt with said "Oh, that probably wasn't a seizure." Then they'd ask 3 or 4 questions and say, nope, that's a seizure alright. And her temp was over 103 when we got to the office.

She hasn't had one that we're sure of since, and she's about to be 3, although she had a dubious incident at daycare associated with an antibiotic reaction (Dr's comment on looking at the record: wow, hives, fever AND joint pain -- let's never do that one again.) She's had high fevers, too. When she had the first one they said "Try to avoid letting her fever get high, but honestly, don't feel guilty if it happens again, because it's the spike not the absolute temperature, so it only happens when the fever goes up before you get a chance to do anything about it anyway". So yeah, the TWO times we've gone "Geez, she's awfully quiet" and then found she had a massive fever, she hasn't had seizures.

It's a bit worrisome because DH's mother and sister are epileptic, but as far as we can tell his sister grew out of it anyway.

[LaurelC]

It happened to DD about a month after her second birthday. She had a fever, and was very lethargic and fell asleep with DH holding her on the couch. When she fell asleep, the fever was somethng like 100.8. I thought we would wait it out.

DH said she was burning up, and tried to wake her, and she was just sort of lying there acting sort of miserable. We took her temp again, and it was very high - almost 105! We brought her into her bedroom to give her Motrin (because that fever was WAY beyond my comfort level) and were planning to put her in a tepid bath and call the doctor. As DH was holding her in a sitting position (she wouldn't sit up) and I was about to put the dropper into her mouth, she fell back, and stiffened up. Her eyes rolled back into her head - I literally could only see white in her eyes. She was white as a sheet, except for her lips, which were blue. Her legs were completely stiff, and her toes were pointed.

I am crying as I write this. It is actually very difficult for me to write this coherently, so I hope it make sense. It was the most horrifying moment of my life. I had heard about febrile seizures, and it was way in the back of my mind - but I was still scared. We called 911 and by the time we got there she was back to "normal." She was very unhappy and was crying, but I preferred to see that instead of her being nonresponsive and stiff!

She did go to the hospital in the ambulance, and that was surreal. They gave her the Motrin and wiped her with cool cloths and the fever started going down pretty quickly. At the hospital, her fever was more like 102 and they gave her some Tylenol. After about 45 minutes to an hour at the ER (and after she had been checked, had blood taken, and been catherized for a urine sample) she was happy and playing. She told me that she was having a "nice time...."

We found out about two days later that it was roseola when the rash appeared. Roseola has a type of fever that spikes very very quickly and can cause these types of seizures. The doctor was glad that we knew it was roseola, because we had something to "pin" it on. We were told that it was pretty likely she would never have one again, but if she gets a fever now, I don't wait it out. I give her something right away.

HUGS to you. I hope you are all doing better today.

[EllasMum]

Hugs. My DD had a couple of seizures at the beginning of December so I know how terrifying they are. With my DD, they were afebrile (without fever) so even scarier. I hope your DD is doing much better and you can get some sleep. I know how that first night is. Believe me, it will get better! Take care, and may you have no more scary days like that any time soon!

[DrSally]

That is sooo terrifying. I couldn't get the boards to come up for the past few days, so I'm late to this. I totally get how freaked out you were and that seeing it is much more alarming than hearing about it. I'm so glad she is ok now and you are all at home. Thanks to everyone for writing about their experiences. I, too, learned a lot about this.

[Jo..]

Caly, so glad that she's still doing well, and that now you KNOW what to look out for and what to do. Knowledge is power, mama.

As for the missing posts (9-12), the servers have been very slow, which has resulted in a lot of duplicate posts which have been deleted. So you didn't miss anything. Give your DD a big hug and try to get some rest.

[calv]

it's horrific isn't it? I'm sorry to bring back such bad memories. I'm wondering what the heck is causing our 15 month old to have this darn fever. Our oldes had roseola back in OCT and from our guess our youngest never got it. I wonder if she'll break out in a hive soon? I guess not all kids get the rash/hives. {{{{{}}}}} Being a parent is so darn tough and quite a crazy roller coaster ride isn't it?

[calv]

Thanks Jo, i really appreciate and am thankful for all the great advice, chat and well wishes from everyone here. Slow boards and one slow and very sleep deprived momma.

How are YOU doing? I miss seeing you around here.

[calv]

Once again, THANK YOU to everyone who took the time to reply and listen to me. Also a big thanks to those who shared your stories. It means so much to me, more than you'll ever realize.

I have another ? and concern. Yesterday DD got her MMR shot. She had a low grade fever. According to the CDC I guess if a seizure is to happen it would be 8 - 14 days after the shot. Has anyone experienced a seizure after vaccinating? I'm on pins and needles because even though these so called seizures are harmless, they're just awful to witness and I just do not want to go through it again. Any thoughts and advice are great appreciated! Thanks again for your support and kind words. :)

Thanks again.

[EllasMum]

I can't speak specifically to the MMR, but I recently took DD for her 2nd flu shot, and the nurse recommended giving her Tylenol round the clock to ward off a fever. She said it is a good idea even if they don't have the fever or any symptoms, if they have a history of seizures.

Hope your little one is feeling better! Hang in there!