View Full Version : the terror of febrile seizures

08-19-2007, 07:44 PM
Please excuse any grammatical or spelling errors -- I am beyond frazzled.

Febrile seizures occur in infants and toddlers from a sudden spike in body temperature from a fever. Our daughter, Solas, had her first series of seizures last October after she received both the MMR and Varicella vaccinations at the same time. Nine days later she presented with a rash and a low grade fever (100.7) when she had three seizure within the span of two hours.
It's a terrifying thing to go through...

We were camping in the ass end of nowhere on Friday night -- no cell coverage and about fifty miles from the nearest big town. At 1:15 AM our two year old had two really nasty febrile seizures. Her fever came out of the blue, just BANG...spiking. Once we got her stationary -- out of the convulsions and in transition -- we rushed off down the road looking for someone with a land line to call 911. We stopped at three different houses and no one would come to the door! We ended up speeding down a twisty mountain road to get to Waldport where we found a fire station with an outside telephone that had a dedicated 911 line. The ambulance came and I rode with my daughter while the hubby followed in the car to the hospital 25 miles away.

We were in the ER until 6:00 AM and they shredded her little arms trying to get blood for numerous tests. Her blood work came back fairly normal -- no huge red flags and no answer for the mystery fever. They gave her tylenol suppositories and she was a bit loagy (sp?) but fine.

My husband and I only had about an hour of sleep and we were zonked -- too zonked to drive any great distance safely. We drove back the fifty miles to pack up our stuff, get an hour sleep before we drove the three hours back to Portland and by the time we got to the ass end of nowhere again she was fine. She ate a huge brekkie, ran and laughed with the other kids -- was completely normal.

By ten she was tired so I laid her down for a nap in the back of the open Subaru...plenty of nice breeze and shade...we kept checking on her while we packed (literally every five to ten minutes). At 11:00 she was boiling hot again so I gave her tylenol. My husband was literally jamming the last of the stuff in the car when she had another seizure and stopped breathing. She turned blue for about thirty seconds. I saw my world ending.
My husband is my hero. During the first seizure in the early morning, he started freaking out and I told him to pull himself together (basically "snap out of it Soldier!"), fully taking control. But when she turned blue this time, I completely lost it. That's when he stepped up and got her breathing.

We rushed back into Newport and by then her vitals were almost perfect -- pulse ox was 98%. She's doing okay now but we are scared beyond belief.

The consensus from the doctors is that these may not be febrile seizures after all. We have an emergency appointment at 100:00 today and our pediatrician is setting up an appointment with a pediatric neurologist.

Send positive thoughts her way...hug your babies!!!!

Rolling Thunder
08-19-2007, 08:09 PM
Oh, man! I hope everything goes well for you and your family, Foinah. Keep us posted.

08-19-2007, 08:10 PM
:Hug2: I'm thinking of you and your family, hon.

08-19-2007, 08:13 PM
Oh, how terrifying!! Keeping your little one and your family in my thoughts and prayers. :Hug2:

08-19-2007, 08:20 PM
Positive vibes and optimism streaming your way.

(My sisters and I terrified our parents with febrile seizures too. Near's I know the worst thing that came of it is that I grew up wanting to be a writer.)

08-19-2007, 08:41 PM
thank you for everyone's kind thoughts. We are going out the door...

will post more info when we have it.

08-19-2007, 08:43 PM
I'll keep my fingers crossed that it's nothing more serious than febrile seizures. Fortunately, febrile seizures, while scary as hell, are generally not serious and have no lasting effects.

And I'm going to hug my baby for never scaring me like that. :)

08-19-2007, 09:11 PM
:Hug2: Hugs and tons of prayers for all of you. I can't even begin to imagine how terrible that was.

08-19-2007, 09:28 PM
Hugs to you and your family. Prayers all is fine.

Danger Jane
08-19-2007, 09:56 PM
:Hug2: and prayers

Soccer Mom
08-19-2007, 10:58 PM
Oh Foinah! I can't imagine anything scary that a small one with a mysterious illness!

Sending love and hugs.

08-19-2007, 11:41 PM
Prayers and positive thoughts coming your way.

As a family that has been through something similar, my suggestion is that you document the circumstances very carefully (keep a log with dates, times, duration, circumstances). It could be very helpful for the neurologist especially when the seizures are coming and going; sometimes the timing can be very tricky, the seizures don't happen while an EEG is hooked up.

There is also a type of seizure called "absence" where the person appears distracted (almost like they are daydreaming). Since they don't go into a full blown seizure they can be easy to miss.

Send me a PM if you want more info. HUGS and please keep us posted.


08-20-2007, 12:53 AM
I am so sorry you have to go through this. You are in my thougts! I hope everything is well.

Ol' Fashioned Girl
08-20-2007, 02:30 AM
All appropriate apendages are crossed... waiting patiently with candles now lighted for your little one.

08-20-2007, 02:41 AM
Oh Foinah I'm so sorry this has happened. I'm praying that everything will be okay. I truly can't imagine a worse thing than seeing your child like that. No-one should have to go through it. Good luck. And yes, I'm going to go and hug mine now.

08-20-2007, 02:48 AM
Foinah, so hope and pray your baby will be alright, and sending prayers and very good vibes.

A. Hamilton
08-20-2007, 03:20 AM
Very scary. Hoping for the best possible outcome. Hang in there!

08-20-2007, 03:34 AM
Thank you all. Solas is okay. She's being very huggy and sweet while fighting this nasty fever. We are stacking ibuprofen and tylenol every three hours (alternating between the two per our pediatrician's orders) but her fever is still 101.2. The pediatrician is stumped -- she thinks it might be some wacky virus. Solas is scheduled for another appointment on Tuesday. We'll be doing an EEG and an MRI because of the severity of the seizures.

We were up all night watching her. We thought she was heading into another one around 11:30, but it passed. The fever just won't stay controlled...

This is scary, but in my heart I know she'll be fine.

Jersey Chick
08-20-2007, 03:47 AM
Oh, thoughts and prayers coming your way! :Hug2:

Last spring, my son went through almost the same thing - he was fine during the day (low fever about 100.0), but at night, his temp soared - at one point it was almost 103. We did Tylenol, etc. and it would come down, but shoot back up. No seizures, though - thank God. Turned out it was some weird virus and time was his best medicine. Hopefully that'll be the case with you.

Extra hugs - just cuz :Hug2:

08-20-2007, 04:04 AM
My husband was literally jamming the last of the stuff in the car when she had another seizure and stopped breathing. She turned blue for about thirty seconds. I saw my world ending.

I cannot imagine anything more frightening, and my thoughts and prayers are with you.

08-20-2007, 04:05 AM
Oh Foinah, you had me in tears. I just don't know what I would do. My nephew suffers from febrile seizures, too, but has luckily only had one or two. I'm going to hug Tessa really tight and say a prayer for your Solas.

08-20-2007, 04:13 AM
Thanks for letting us know. Still sending more hugs and prayers. Try and get some rest as well (although I know that will be almost impossible for you to do).

08-20-2007, 07:16 AM
There's nothing worse in this world than a sick child. I'm sending any and all positive, healing vibes, prayers and great good wishes that your little one comes back strong and let's her parents get some rest.

08-20-2007, 07:38 AM
What a scary time for you.

May I just say that as frightening as this is, the fact that it IS a fever indicates that it is something transitory like - a virus or infection of some sort. Fevers (in general) are a good thing because elevating internal temperature is the body's way of dealing with virus/bacterial invaders.

You have all my positive thoughts and good wishes for your wee one to be up and at 'em very soon.

Jean Marie
08-20-2007, 05:28 PM
Wow, Foinah, I've been thinking of you and your little one. Hope all is well and you find out that everything is going to be okay. Tuesday is only one day away :Hug2:

Hang in there.

08-20-2007, 06:40 PM
Oh Foinah, my heart goes out to you, your husband, and Solas. I hope that these are only febrile seizures and she will be in the 97% that does not develop epilepsy.

If you want more information about testing, seizures, or what you can expect from these dr. visits, check out www.epilepsyfoundation.org (http://www.epilepsyfoundation.org/) (e-Communities (http://www.epilepsyfoundation.org/efforums/forum/categories.cfm?catid=2) has a parents board) or BrainTalk (http://brain.hastypastry.net/forums) (my search isn’t functioning, so I can’t find the right forum for you). I haven't been on either lately, but when I did visit their forums they were very helpful and supportive.

08-20-2007, 08:11 PM
Solas' fever broke during the night. My God that was terrifying. She had one minor seizure around 8:30. She was aware of her surroundings but her arms and legs were rigid and shaking -- it was like her motor function had a stutter. She still isn't acting sick -- no snot or cough...no GI symptoms. Her urine and blood looked fine in the tests.
She's just a bit out of it still. Her face is puffy and her left eye is a bit swollen -- the doc said it was probably from the trauma of the seizures. She snuggled with me all night. I'm so glad that we still co-sleep.

After looking through all the info you guys have provided it looks as though Solas may also have other kinds of seizures outside of fever related events.

Thanks for all of the support and well wishes. This is such a great community.

08-20-2007, 08:45 PM
My pediatrician told me that kids can get odd fevers. It doesn't mean that they don't have a virus, just not one that has visible symptoms other than the fever.

If you think that she has had other seizures besides the febrile, than one of the best things you can do is document everything. (I think that was mentioned in this thread already.) Hopefully Solas doesn’t have any more seizures before your neurologist appointment, but if she does have anything that looks odd, write it down. Write down anything else you can think of that has happened in the past that you are questioning. Once you are at the neuro’s office, it is easy to forget items. It can be overwhelming. It was for me, and I was there for me. I know if I went in for my kids, it probably would have been more overwhelming. It is good that you are getting a referral for the neuro. Many people have to fight for that referral and that is the last thing you need right now.

Thinking positive thoughts to Solas, you, and your husband.

08-23-2007, 05:54 AM
I am overwhelmed with the kindness and warm wishes from everyone here. You guys are wonderful. I appreciate all of the links and kind PM's and notes. This has been a scary situation and the kindness I have received from this community is truly amazing.

Here is the update. This is a pasted post from an email I sent out to my friends...

okay. Solas is doing all right. Late Sunday night her fever spiked up to about 103.something despite being on a stacked dose of both tylenol and ibuprofen. We gave her a lukewarm bath and brought it down to about 102. We were worried because there seemed to be no organic cause for the fever. She had another seizure type episode...more described as "rigor" -- a stiffening of the arms and legs with prominent shaking. She was fully conscious and aware during the episode.

On Monday night she presented with a chesty cough and a runny nose and had enlarged lymph nodes throughout her body -- neck, arm pits, groin. This was a good sign. It meant that she actually did have a virus of some sort. Her left eye and face remain swollen, with her left eye now presenting with redness and slight discharge. She's complaining of stomach pain, painful nose and eye.

We had an appointment on Tuesday with her regular pediatrician and we decided that we would wait until her symptoms improve before we proceed with the EEG and MRI as she will need to be sedated and that might be an issue with the fever and congestion. Her pediatrician is setting up an appointment with a pediatric neurologist for next week and we will do the tests ahead of time so he will have the results to go over at the appointment.

Her fever is down today -- she is till on the nsaids just to be on the safe side. Her eyes are glassy and she is extremely fussy and cuddly at the same time. She hasn't lost any mile stones such as speech or coordination, but she is a bit wobbly on her feet. She alternates between almost being completely normal and then lethargic and loagy (sp?). Sometimes she scares the absolute bejayyyzuss out of me but then she's back to her incredibly bright self. She told me she was sick. She also said she was scared. I try not to be too emotional around her -- don't want her to see me looking scared or crying -- I just cuddle and kiss and coddle. She may come out of this a total spoiled brat! Over indulged and pissy! Ha! Well, she's earned it.

I don't believe that she will have another seizure (grand mal type), but I am concerned as she has had a number of those "rigor" type seizures over the last seven months.

Derek and I finally managed to get some sleep -- I'm still wonky -- but we are keeping a round the clock vigil. Solas is always within about five feet of either one of us. We are okay. Scared, but okay.

She is our whole world. The pediatrician was horrified that Solas stopped breathing. Everyone keeps saying that that is a common phenomenon with febrile seizures and that the person will usually start breathing on her own. Erika (our Ped) started to say the same thing but listened when we told her that Solas had gone completely blue for about 30 seconds, wasn't moving and that her eyes were fixed and glassy. If Derek wouldn't have given her rescue breaths she might not have come around. That is the terrifying part. These aren't just "febrile" seizures. They are complex febrile seizures...We now have a prescription for Solas in case she has another event like this. We are supposed to just dial 911 and wait for the paramedics. If she stops breathing we administer the meds and go from there.

Every time I close my eyes I see Solas' blue face and still body. That will haunt me for the rest of my life. Derek is the man...he is my total absolute hero. FOREVER.

So, that's the update. We'll know more after the tests. Solas is doing fine. Derek took her for a walk in the back pack.

Needless to say we will not be doing ANY traveling for a very long time. Probably until she is about six because there is no way to gauge the onset of a febrile seizure. It usually happens before the child even looks sick...

I won't be in the middle of nowhere again -- no cell coverage or away from a hospital. I just won't put her in that kind of danger. Flying is right out. So is camping for a while. As I said, we'll know more after the tests.

08-23-2007, 07:21 AM
The positive vibes are still coming at you all. No matter how many times I do it, no matter how sure I am that everything will be fine in the end, no matter if its a paper cut or pneumonia, I still ache every moment my child is in pain/fear. Saying "don't worry" is like saying "stop your heart from beating", so I won't say that. I will say that sometimes children present extreme symptoms for common ailments. You have all my good thoughts and prayers.

Jersey Chick
08-23-2007, 07:37 AM
Absolutely - still sending vibe and here's a few more hugs - you've earned them. :Hug2:
If you've enough, store 'em away until you need them. Nothing in the world brings everything to a screeching halt like when your child is sick - we'll be thinking of you!