Kolya had 2 siezures yesterday

Hello all,
Just want to let you know that we had to take Kolya to the hospital yesterday.Presently she's tired and sore, but recovering well.

Here's the story. Around 9 AM yesterday, Kolya and Drexel were playing in their room. Drexel came into our room and said "Daddy, Kolya won't talk to me, she's laying down. She won't talk to me." He was very insistent, and the way he said it let us know something was wrong. When I got into her room, she was laying on the floor, her eyes open, her tongue sticking out. She was not responsive. We called 911 and the paramedics arrived. By this time she was starting to move, and look around, but she still wouldn't speak, and didn't appear to see us, or anything, very well. Finally, when I asked her to smile, she smiled. We rode in the ambulance to Weiss hospital and she finally started saying one word answers at the hospital. After 30 or 45 minutes of lackadaisical attitudes at Weiss, we took her to Children's Memorial hospital, where they immediately put her on heart, respiratory, and blood pressure monitors. A doctor talked with us to get all the previous history, in detail, of what led up to this. Right after the attending physician entered the room, Kolya had another seizure. We put an oxygen mask on her, as well as an IV and she settled after 30 seconds, although it was an eternity to us. She came around and was fairly happy, and tired, and hungry. She got a CAT scan and a spinal tap, and after that she was allowed to eat while we waited for the results of the tests. They all came back clear; no meningitis, encephalitis, viral or bacterial infections.

Previous to all this, Kolya had a slight cough on Wednesday, a fever on Thursday, and was very lethargic on Thursday. She hardly ate anything. Friday morning, she threw up 3 times. She said she couldn't see, but we think it was blurred vision from dehydration. We aren't sure what exactly happened, but we are very grateful that at least it's not any of those big ones, meningitis, encephalitis, or the like. We are waiting on some blood work which will be done in a couple days, and will be going back for outpatient visits to see a neurologist for MRI, and EEG and other tests. There is a chance that there is some form of seizure disorder, but we are hoping and praying that this is just one of those freak seizure episodes that sometimes happen.

We were so blessed by our friends here at Jpusa. While the paramedics were here, our neighbor, Becca let us know that she had Drexel and would make sure he was taken care of. She called Bethany (Drexel's favorite babysitter) who came home from work and had him all day. Another neighbor, Karen, handed us her cell phone and some cash so we could buy food at the hospital. When we decided to go to Children's Hospital, the coordinators switched around the vehicle schedule and handed me keys within moments of me letting them know the situation. We felt so supported and cared for.

A moment to brag on my kids: As I said, Drexel was the one who found Kolya and was so insistent that I come and see her. What a hero. We heard that he voiced concern for her at different times all day. Once Kolya could speak, she let us know that she was worried about who was taking care of Drexel, said repeatedly how she missed him, and after she finally got a popsicle at the hospital, asked if Drexel could have one, too. We called Bethany, and asked if she would buy him one, from Kolya. I'm so grateful for these kids, they sure look out for eachother.

Please pray for Kolya. She's very sore from the spinal tap, and can not stand up straight. Sometimes her legs hurt as well. Pray that she would be able to continue to be the cheerful, resiliant Kolya that we all love. She's got a barrage of tests ahead of her, and we are really praying that she doesn't become fearful and angry about her situation. So far, so good, she remembers very little about her whole day yesterday.

Drexel needs prayer too. He was especially clingy today, and hardly wanted to let any of us out of his sight.

We will keep you updated on Kolya's condition as we find out more information.

Eric


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Goes without saying that you've got my prayers.

How are you and Cindy doing? It's far tougher watching our kids go through things than going through them ourselves.

 

Consider it done my friend. Let me know if there is anything I can do.

 

I'm so sorry to hear about this, I hope the doc's nail down a diagnosis soon. Both my younger brothers had Spinal Meningitis at the same time, and that was a seriously scary time.

Sounds like your kids are each other's best friends, that's awesome Mad props to Drexel for looking out for his sister

 

We are hoping for the best over here in AZ.

 

Thanks guys, we sure appreciate it.

Cindy and I are doing okay. We're tired, but we're okay. The day was hard, but the hardest part, other than the actual seizures, was what they call the Postictal Phase. That is the period after the seizure, and the person can be disoriented, confused, angry, violent, and complain of headaches and blindness. Kolya experienced confusion, disorientation, anger and violence. This was quite a few hours after the siezures, and it was complicated by the light sedatives they gave her during the spinal tap, the pain from headache, IV, and spinal tap, stress, and utter exhaustion. She didn't know who me and Cindy were, and kept kicking at the walls, and grabbing at the bars of the bed. When we were trying to get her dressed, she bit me really hard on the shoulder, and attempted to bite me and Cindy one other time. It was pretty rough to deal with. When we got her home, she settled rather quickly, and crashed on the futon couch in our room. I slept next to her to keep her from falling off, just in case something were to happen again..
When we woke up this morning, our sweet little Kolya was back. She smiled, asked me how she got in our room, and generally didn't remember the previous day, which is good. She said she had a dream about driving home by herself (that must have been the trip home, she kept wanting to go back to the hospital) and when Cindy told her she bit me, she said " that was in my dream, too!" It must have been quite a blur for her. I know it was for us.

 

Yes, I was thinking meningitis even after the first seizure, and we were relieved when they ruled it out. What happend with your brothers? What is the treatment for meningitis?

Yeah, Kolya and Drexel really love eachother, and then, as soon as they are together, they fight and argue over the silliest things. None of us have ever done that, though!

 

http://Best of luck Kolya!

Seizures are a very scary thing to witness,even for the hospital personnel. Because Kolya had a fever,this could be a one time occurance(fingers crossed)

 

Drexel certainly deserves a reward for this one. You should be very proud.

 

you are in my prayers i had something like that happen to me when i was in highschool one night my eyes rolled into my head and it was like i could not control them after afew mins it stoped my mother thought i was trying to keep from going to school the next day and the next day when i was in school i was in the lunch room going to put my tray up and the next thing i know i woke up in the nurse's office they said my eyes rolled into my head and that i fell to the ground and kicking wildley they still dont know what happen to me to cause that i just hope it never happens again and i hope the same thing for Kolya and that you and your wife never has to go though that again.

 

Thanks BLAJY, I'll be sure to show him that!

 

How long ago was that? Man, I'm glad you are okay.
And thanks for the kind words. I too, hope it never happens again.

BTW, I'm Eric, nice to meet you. Welcome to Major Geeks.

 

nice to meet you eric i'm kris that happen lets see 5 or 6 years ago i was maybe 14 or 15 when it happen i know for a fact when that happen at school about after i woke up i was still unable to roll my eyes back for 3 or 4 hours and after that my eye mucles was hurting for about a week after and i just hope noone has to go through the same as me. and thats for walcoming me to the forums

 

Hi Eric and Cindy - So sorry to hear about Kolya's seizures ! As someone said , the fact that she had a fever may have brought them on. I am really glad you did not stay at the first hospital, and took her to Children's Hospital - much better care for kids at such a facility. Please be sure she gets a thorough check by a neurologist when she's doing better - just to be sure everything is alright.

Hope you guys can get some rest - I know when my boy is really ill I can't sleep.

As always - prayers and love to Kolya, Drexel ( what a smart boy !) and you two also.

 

Eric and Cindy,
My prayers are with you!

 

you know you're all in my thoughts, I hope it turns out to be nothing serious and that it was just a once in a lifetime thing

 

wow sounds like you had it rough. it's times like these that give a parent gray hairs. hopefully, this is a once in a lifetime situation. sounds like you have a good support system there in case of emergencies. my two children were close like yours... they are still best friends and partners in crime.

 

I'm sending warm thoughts and well wishes your way! I hope everything works out and that your daughter has a speedy recovery!

 

What a great family Still be in my thoughts

 

Sorry to hear about Kolya. If it's any comfort, my nephew had seizures like this when he was 2 or 3 and he's fine now and hasn't had one since.

She will be in my thoughts as anything to do with the ole noodle naturally concerns me after years of counseling kids with brain injuries. Especially when it comes to children.

Hugs all around

 

Re: Kolya had 2 seizures yesterday

Cindy & Eric...what a scary thing to go through but how GREAT that Drexel alerted you the way he did...smart little guy you've got there...but then we already knew that didn't we? My hope along with yours is that this was all brought on by her recent illness...an isolated incident never to repeat itself.

I'm hoping and praying that the EEG and MRI come back normal. Did they tell you they will probably sedate her for the EEG because she will need to be perfectly still? You might want to get her a special treat like a cutesy hat to wear home to cover all the goop that will be in her hair. Kolya's hair is so dark and the adhesive they use to attach all the sensors is white...need I say more? We have pictures of Lexie & Kadinz with all the sensors attached...it was scary to see them like that but looking back at the pics reminds us of how they triumphed over something that could have been a life time of struggles and of course, they will have the pictures when they are older.

Please keep us posted as to how things go...how Kolya and Drexel are doing and you guys too of course! I am so glad you had your extended family there to help you through all this....it always makes things easier when you have the love and support of those around you.

My thoughts and prayers are with you always.

Hugs!
Teresa

 

My prayers are also with you.

Your son was so smart to let you know something was wrong. Kids are very in tune with each other..

Your daughter sure sounds like a sweet little girl.

I hope the tests all come back negative and it was just caused from the fever.

Gal

 

Eric and Cindy: Will say a special payer for the little one. I hope the MRI or EEG show something, at least then you will have someplace to start when it comes to treating her. I should know this but will ask anyway: How old is she? More than likely it was not a febrile sz. If you, can have them do an open MRi instead of closed. This way she will not have to deal with being claustrophobic. They may sedate her anyway. Did Drexel happen to mention if she fell or had some kind of trauma? Either within the past 24-48 hours. If so she may have had a seizure secondary to that. the MRI will show if she has any slow bleeding from any trauma. Be wary if they want to do a cat scan with dye. Kids are very sensitive to that stuff.

Meanwhile drexel deserves a group hug and kiss. The boy is wonderful.

the postictal phase can be very disturbing if you do not know what is going on. People react differently but it sounds like she came out of quite well. I hope they discover the cause. Godbless!!!!

 

Eric, I'll be remembering you, Cindy, Drexel and especially Kolya in my prayers and thoughts. It sure does sound a bit like Meningitis, could be a lot of things, though at her age.

Although I'm not around much I think of you all often.

Take care.

 

I'll be thinking of you and your family Eric. I've been there, with my youngest, when she was a baby. I thought she was choking when it happened, and my Wife and I were holding her upside down and sticking fingers down her throat for a panicky minute until we realized that she was breathing and that it was actually a seizure. We got her to a hospital and everything turned out okay. I'm sure it will with you all too.

Btw, smart boy you've got there. Extra helping of ice cream tonight.

 

Sorry to hear about Kolya, as well.
its good that he remembers things(I think)
I have had seizures for years and don't remember anything

Drexel sounds as if a heart of gold. . .and very alert it seems. . .
the first time my girls saw me have one. . .they too alerted my wife. . .
kids are good like that. . they feel things that adults have forgotten somehow. .

best of luck. . .to all of you

 

I think it goes without saying, i know how you feel. And let me tell you right now, SHE will be FINE. It's you and Cindy who will be the most traumatized by all of this, and at some pint question your fault in the whole thing, and whether it's right for you to make her endure all these tests...

You're wonderful parents, and the next few weeks are going to be hard. Harder still if they find nothing, like with Kahlyns and you have no answers and a million questions. Just keep positive, and Keep her positive she wont remember any of this very soon, and no matter what they find she will be okay.

If you need to talk, send me the number, I can call now. I love you both, and she'll be okay. You're doing everythin you can, and you love her and thats all that matters .

 

Thanks for the info. Definitely some helpful stuff there. Kolya turned 5 on Saturday (this all happened the day before her birthday!). The Dr's were hesitant to call it febrile because she didn't have a fever at the time of the seizures, and because she had a second one. I'll request the open MRI if it's available. I'm hoping to avoid as much trauma as possible with the tests coming up. She's proved to be a pretty resilient kid, but I don't want to see her developing an unhealthy fear of Drs. Fortunately she doesn't remember much about Friday. She had one CAT scan on Friday, do you think they would want to run another one?

We're just going to take it one day at a time. I panicked yesterday, because the pharmacy couldn't get her prescription done until yesterday evening (we had dropped it off the night before) and Kolya missed a dose of her depakote that morning. We had requested the depakote in a liquid form (if that's even possible) because she's never swallowed a pill before. We also had a prescription for tylenol in suppository form because she was so violent and spit out her fever reducer at the hospital (her temp. went up right before we left ) They gave us the tylenol in liquid form and the depakote as pills (they didn't have the full amount, so they gave us a partial prescription). I freaked out, because I didn't know how I was going to get her to take the pills and it said not to chew or crush them. I finally asked her if she would try to swallow it with a bite of her soup, and she did it no problem. What a relief. We've given them to her today with a bite of applesauce. I've been able to stay pretty calm through most of this, but the incompetence set me off. I'm really secure with the hospital that we're working with, so that helps a lot.

Thanks again (to everyone!) for all your prayers and concern. We've definitely felt it all the last few days.

 

To my understanding(I too am on Depakote) Tylenol shouldn't be mixed with Depakote. .I may be wrong, but I was advised not too. .
missing doses also can cause seizures. . .
What kind is it?
Time release?
sounds like it if you cannot crush them. . .

and just to let you know. . Depakote time release is not avail in generic because of a patent{go figure} and Abbot(the Pharmicutical Company) could have that patent for twelve more years(who knows)

again hope everythings gonna turn out ok. .

 

Thank you, I will look into that!

 

So sorry to hear about your sweet daughter. It's one thing to handle medical problems for yourself but when something's wrong with your kids, I know it's an entirely different story. I will pray that the doctors will order the correct tests and will find the cause and solution (if needed) as soon as possible. Waiting is so hard too.

"For You, God, created Kolya's inmost being;
You knit her together in Cindy's womb.
We praise You because Kolya is fearfully and wonderfully made;
Your works are wonderful,
We know that full well."
Psalm 139:13,14 (a paraphase)

 

Thank you so much, Pegg. We had a lot of peace during the whole ordeal. I know that while Kolya is MY daughter, in relation to me, she is not MY possession, she is God's and He loves her far more than I do, and whatever He sees fit to do, well, I just trust Him.

Thanks for the prayers, we'll keep you updated.

Eric

 

After looking into it, it looks like Tylenol is fine - no interaction, but Aspirin is no good.

 

Eric and Cindy - you and your family are in my prayers.

 

thats good to "hear"

 

So how are things going today? Any bettter?

 

Eric, scary stuff. When my son was pre-school, He had 2 siezures, about a year apart. The first was similar to what you went through. We were getting ready to go tobogganing, when my daughter came out and said "Corey's laying on the floor jerking his head." I went in and freaked when I saw him. We all bailed in the van, and headed off to the hospital. My freaking rubbed off on the other kids, it was not good. Corey was laying in the van, moving less and less. I thought he was dying right before my eyes. He came out of it at the hospital, and was fine. The relief was huge. I cried like I've never cried before.They didn't know what was wrong so they kept him overnight. The next time was similar but they figured this time that it was a siezure and a bunch of tests followed. They wanted to put him on siezure medication for life, but we refused, because they were so far apart. The doctor was not impressed at all, but with the side effects from it, we wanted to be sure it was necessary. He hasn't had another since so we made the right choice. Be sure yourselves before you commit. I wish you all well.

 

im really sorry to about this
glad to hear that she's alright though
good luck, and you will be in my prayers

 

She definitely seemed better today. Still stiff from the spinal tap. Rather than stretching out her back, she's walking hunched over which is a little disturbing, but with some ibuprofen, hot compresses and some stretching, she stands up a little better. My Dad said that he was a little sore for a couple of weeks after his spinal tap, so that's been a bit of a comfort. We've got an EEG scheduled for next week, and the neurologist is reviewing her file and we'll find out tomorrow or Thursday when that appointment will be. She's taking her medicine fine, and we haven't seen any side effects except that she's sleeping during her nap pretty regularly rather than just playing quietly.

We haven't sent her back to school yet. I'm just not sure when I'll be ready to have her out of my sight like that. We went out to the movies after the kids went to bed tonight, and had our friend listen out for them. Still, I was a little nervous. We're getting a phone put in our room (we've just had the public phone out in the hallway until now) and that will make me feel better about her going back to school and people being able to contact us in the event of another seizure. Plus, with all the Dr's and tests, it will definitely make my life easier to have phone mail.

Well, again, thanks everyone for your prayers and hopeful comments. We're hanging in there pretty well. I try not to think too far ahead at this point. One day at a time, and we'll see what happens. Kolya has been very resilient through all this so far. She seems to have an amazing grasp on it all for being only just 5. She asked me what a seizure is, and I got down on the ground and showed her what she did when it happened. Afterwards, she said, "that must have been scary, Mom".

 

Cindy and Eric: just wanted to say hello and follw up on how she is doing. looks like she is doing well. Depakote has to build up in your system. It takes a while so if you miss a dose it may take longer. I do not say this to alarm you, just to make you aware of it that's all. Also, Have they said when she will need to have blood drawn for a valproic acid level? Sorry, depakote is valproic acid. i believe that periodically they need to check it in order to make sure her levels are good. Just cannot remember how long after the initial dosing that they wait.

Once again, i am sayng a prayer for your family...

 

As a mother of four beautiful kids, I can only imagine just how scary that incident with your little one was. I'm so glad she's doing better now. We love and adore our kids and would lay down our lives for them. And you think you can't love your kids any more than you do. But when something like this happens, I think it makes you stop and re-assess your love and devotion to your kids. I have been fortunate to not experience anything quite like you have but my now 6 year old was run over by a van summer before last. Fortunately, he was on soft ground and wasn't even scratched. (His angel was there, no doubt). It made me realize even more how much my kids mean to me.

I've gotta tell you, Drexel IS a hero. No question!! I was so touched reading your post. And Kolya.....requesting the popsicle for him........my gosh, how sweet! Just goes to show that heroes come in all shapes and sizes and that a child's love is beyond measure.

My thoughts and prayers will be with you and I hope her soreness and stiffness will soon be all gone!