Seizures Suck

Saturday, December 19, 2009

"Seizures suck!!" - Jill Soldatke

I have always known that. But yesterday, from a first hand experience we learned how bad it feels to watch your child seize!

Cayman had three seizures. It was as horrible of an experience as we always imagined it would be. Her body became limp, she twitched, her eyes rolled to the side, and her personality disappeared. She was awake but it's like she wasn't there.

It felt like the most agonizing minutes of my life and it is a difficult for me to write about it. Even now, in the afternoon of the next day after the seizures happened, I can still cry every time I think about it.

When the first two seizures occurred, we were out shopping. It was nearly 2 hours past Cayman's bed time so we were trying to quickly get done. Mike and I split up in the store to gather our needed items. I took Cayman along with me. That's when I saw the first seizure. That one was mild and brief, maybe lasting about 15 seconds. I wasn't even totally certain it was a seizure, I just knew something wasn't right. Cayman wasn't quite herself. I kissed her forehead and she felt warm. I slipped my finger down her shirt, just under the collar, and she was burning up! I frantically grabbed my cell phone to get a hold of Mike in the store to come meet me. We took Cayman's sweater off, stripping her down to her onesie. She seemed to be a little better after that. So we calmly headed to check-out. Then Cayman started to seize again. This one much stronger. We apologized to the startled cashier and quickly exited the store, leaving in the middle of the check out process.

Cayman came out of that seizure about 8 minutes later and was sleeping peacefully. At that point we had driven to the nearest hospital and was outside of the E.R. doors when she had just fallen asleep. I was afraid that if we took her into the hospital she would wake up again and seize, when at that point I thought the lack of sleep was maybe bringing on the seizures. Cayman did have a big, long day in Ann Arbor the day prior and it was past her bedtime.

We decided to just drive home which was only a 15 minute drive from where we were. Our hometown has an E.R. just 3 minutes from our house so we felt assured that help would still be close if we needed it.

When we arrived at home, Cayman was still asleep and we laid her down in her bed. I took her temperature and in that process she woke up. The thermometer reported a 103 degree temperature. We grabbed the Tylenol but Cayman started to seize again.

Mike tried to call 911 from both of our cell phones but the call would not go through. Even now, trying to dial 911 does not work on our phones. This is a situation that our cell phone service is trying to get worked out for us. It is frightening not being able to call for help.

We grabbed our coats and not even stopping to take the time to put them on, rushed out the door with seizing Cayman in my arms. We drove to the E.R. and that is where she was until a little after 4 a.m.

They did lots of tests. Everything checked out fine. We're not really sure what caused the fever. It is possible she's fighting a little viral bug, along with teething, and a couple of busy days, all that in combination together brought on a fever, which is what caused the seizures (febrile seizure).

{It was so lovely to see Cayman's bubbly personality return.}

I rest a little easier knowing that a febrile seizure doesn't mean that this is the beginning journey of a trip down the epilepsy road. But my heart feels heavy as my mind is flooded with the thoughts of all the families I know that do travel that road. We hurt for them today more than ever as we can identify to this nightmare.

32 Showin' Comment Love:

Michelle said...

OH, I am soooo happy to hear that you are home and little Cayman is safe and sound! My heart goes out to you and I just pray that this is an end to it.

Michelle said...

Oh - and the Seizures Suck comment came from an email Jill sent me after our last round in the hospital with Owen. I just couldn't find better words than those to describe how I felt about the whole thing!

Krissy said...

my heart sank when I saw Mike's FB update last night. I cannot express the relief I feel for you that these were "just" febrile seizures, but my heart aches for the memories you'll have now of those terrifying moments. Much love to you guys. Praying for an uneventful (medically) holiday and new year for you.

Lisa said...

I hope and pray that this was an isolated incident and that you won't be facing epilepsy.

Most of all I am so glad that you are all home now and that Cayman is smiling again. What a cute picture. She is a trooper!

Now get some rest and then go buy those items you had to abandon at the check-out! :)

Josephine said...

What a scary experience. I'm so sorry that you had to go through that, and I pray that this will be a one-time deal for you!

Tara said...

Oh my this brought tears to my eyes! I hope and pray this was a one and only time occurance for you and Cayman. It is extremely scary not being able to do anything and just having to sit back and watch.

My name is Sarah said...

This is Joyce. Oh my how scary that must have been for you especially not being at home when it started. Hopefully it was just a fever induced situation.

The 911 cell phone issue is a huge problem. Sarah stopped breathing in my car two years ago February and I made the instant decision to go through red lights and proceed to my house at a high rate of speed to be able to call for help on the land line that I knew would go directly into the 911 dispatch system. As dangerous as that sounds I figured less time would be lost.

I know the AHA has been working on the issue from a public policy perspective although I haven't heard lately where Ohio stands. I will call them on Monday and see what has been happening the past few months.

Shannon said...

Reading your account brings tears to my eyes...I pray this was an isolated incident and that she (and you and Mike!) don't have to go through such a scary scene ever again.
Our family continues to pray for y'all!

Anonymous said...

James is in the hospital now for the same thing, a fever and some seizures, he had an MRI done today and we are awaiting the results. He is also on IV antibiotics for some type of infection. Hope Cayman feels better soon.

Sue said...

I understand your seizure fear....we lived thru that in NYC this summer. Happily that seems to be in the past now. This sweet girl better behave so Santa stops at your house!!!! You all continue to be in our thoughts.

*Monica said...

oh no! My heart stopped when I saw the blog title in my blogroll. My oldest son had simple partial seizures in grade school and they were terrifying. He outgrew them, but the blank look on his face still haunts me.

I am sending prayers up right now for this to never happen to sweet Cayman again.

Carey and Jon said...

Praise the Lord Cayman is doing better!! I prayed for you guys as soon as I saw Mikes update on facebook. Hope everyone is well now! :)

KajnBlonde said...

Kristen,
I can't even imagine the fear that you and Mike experienced.

I am glad that you and sweet Cayman are home. I hope the three of you had a very quiet, restful day.

Hugs to all of you..

Mary

The James Family said...

OH Kris... seizures DO SUCK!!! We are so sorry that you guys had to go through this. We pray that you will NEVER have to go through it again! It's one of the worse feelings in the world! Anyway... just wanted to tell you that we love you and you guys are in our prayers!

David said...

i'm sorry to hear about this, but i'm glad that things are ok now!

my word verification is ructudd

Anonymous said...

Hey guys!! We've been thinkin' of u and praying for u all day today!! So glad to finally be home and find out an update!! We have never been thru seizures in our children so I can't even begin to imagine...but I can only imagine when u say they SUCK!! Sometimes that's the only possible way to explain some things in life!! Thinkin' of u all over the next few days as you slowly put ur minds back to ease that she's okay!!! It's gotta be a scary thing!! We love you guys!!
Nick and Valerie

Kim said...

I've got chills just thinking about it Kristen. I hope this is an isolated incident and little Cayman gets better. You all are in my thoughts and prayers <3

Sherri said...

I have been away from my computer all day and just read the news...I am SO sorry to hear this. We will be praying that it was solely from the fever and that it has nothing to do with epilepsy. Get some rest! And give that sweet girl some hugs and kisses from Nebraska.

Tyler said...

My heart sank this morning when I saw the prayer request on Jill and Matthew's site. I worried about you all day at work. I can't pull up blogs or facebook at work so I was just waiting to get home to find out how cayman was doing. I am pleased to hear that you guys are back home. I pray that this is just an isolated incident.

Diane, Tyler's mom

Jennifer said...

Kristen, I'm so sorry to hear about all this! I'll be praying for you over then next couple days. My heart hurts for you and how scary that had to have been. HUGS!!

Sara said...

Oh my goodness, I cried when I read this. Knowing how seizures affect Kadyn, I just cried, and I imagined how it felt for you to see your child seize for the first time. I know how I felt. I really hope it was just brought on by a fever and that it remains just a febrile seizure and doesn't end up epilepsy. I do know that seizures suck. They are scary and heartbreaking to watch. I pray that she doesn't have another one :(.

I am glad though that she returned to her bubbly self!!! :)

Kacey Bode said...

Oh Kristen, I am so sorry you guys had to go through this, I can not imagine how scary that would be!!!! I am glad that she is back to her wonderful self. I'm sure it was just the febrile seizures and lots of kids have those!

Give that sweet baby a kiss for me!

Sheila Smith said...

Hi Kristen, So glad to hear Cayman's doing better. That must've been so scary for you guys.... Thought I'd give you a tip from a nurse point of view regarding the 911 cell phone thing. In most counties anywhere, 911 calls from cell phones are routed through the highway patrol, and it takes forever, if they get through at all. If there's ever an accident on a freeway, for example and everyone starts calling from their cell phones in their car to report it, it just clogs up the system. So what we learned in our ACLS/CPR classes to do was to program in the direct phone number to dispatch in your county, and the call will go directly to them. Just call the non-emergency phone number to your police station and they can give you the number to dispatch directly. I have all the direct numbers for all area counties programmed into my phone and it's worked to my benefit many times. HOpe this helps! Take care!

David said...

are we going to get a sunday post?

oh yeah, and have you seen the commercial where the family is all dressed up op in ohio state gear? you'd probably like that!

Amy J. said...

We will remember your sweet famiy in our families prayers. I am so sorry...no mom or dad should ever have to go through that. I ache every time I hear about parents struggling through their children's seizures. It seems that there are a lot of thoughts and prayers on your behalf...how awesome to be surrounded by friends and family who love you.

Carla said...

Oh Kristen my heart fell when I saw your post title:( I'm praying that the seizures stay away. How scary.

Stephanie said...

My oldest had a fever seizure once and only once. My heart goes out to you. It is a scarey event. Praying Cayman is feeling well and you have a beautiful Christmas

Zoe said...

I hope that Cayman is feeling MUCH better. I will be praying that this was an isolated occurance!!! How scary this must have been!

Tsquared417 said...

Matthew had a seizure at 6 months and stopped breathing and it was the scariest experience of my life. I can imagine how terrified you were. I am so glad she is ok!!

The Soldatke family said...

I just want you to know I want to make T-shirts with the words "seizures SUCK" for our kiddos. I HATE seizures....it should be a 4 letter word!!

Katie said...

this is heartbreaking! i cannot imagine the terror!I am so very sorry to JUST now be reading this. I pray that these were because she was sick. I hope, like Lisa, that this is not epilepsy.

I pray that you, cayman, and mike have....

PEACE for this Christmas!!!

Anonymous said...

I am a frequent reader/first time commenter. I found you from Michelle's site. We too are cord blood buddies.

I am a little surprised by the febrile seizure diagnosis. My daughter has Hydro and Schizencephaly and had her first seizure in October. Our Neurologist pretty much ruled out febrile seizures b/c of her brain anomolies. She is now on Trileptal and has not had a seizure since. Did they discuss medications with you? I certainly hope that this is an isolated incident but am very surprised with the different practice methodologies in the similar cases.

Amy Hendrix
amybhendrix@yahoo.com