Two Weeks

And so the new count of days since the last seizure has begun.  It has been fourteen days. 

The question I get often now is, "So, she's okay now?"  Every single time I say yes I feel like I'm lying.  Is she okay now?  Right now in this very second, yes, she's fine.  Is she cured?  No, she's not.  This will probably happen again.  That's not what people want to hear, though, is it? 

I mean, I get it.  No one wants to hear about sick kids, so when they ask if she's okay, they need to hear yes more than anything.  Right now she's absolutely amazing and fantastic.  She's beautiful and golden.  Her spirit is strong, and her personality is fun.  The thing that I'm struggling the most with right now is going back to living with the fear of what's next.  Please understand that we're not living IN fear.  We're living WITH it.  It's currently occupying the raw hole in hearts that was ripped open two weeks ago.  It's our new best friend.

Fear is good, though.  We're on alert.  Hopefully we won't be caught unaware again.  That's the worst part, I think. Well, that and not being able to find out the cause.  I'd love to be able to hook her up to machine and identify a cause, and then remove the cause. 

She wants a bowling birthday party.  I think we're going to make it happen. 

Twenty-Five Months and Nine Days

Twenty-five months and nine days. Don’t worry…this isn’t Rent. I’m not going to break into song while simultaneously offering you the minutes, and then ask you what can be accomplished in that time. No, that was the amount of time that my daughter had been seizure-free. During that time, we became accustomed to a “normal” life. I put normal in quotation marks because it’s such a relative term, but in this case, I think it works.


We didn’t have to worry about making sure we brought the rescue meds and care notebook every time we left the house. We didn’t have to worry about her having a seizure at school. We did family things that we’d never been able to do before, like take really long car trips without fear of how it would affect her seizure threshold. She ate junk food, and stayed up late watching Doctor Who. We freaked out her daddy when we bought her first bra. She got over her love of Justin Bieber, and developed an unhealthy crush on Zak Bagans from Ghost Adventures. I didn’t worry about her ever single second that she was away from me because, hey! We had 100% seizure control.

I guess I did do a bit of what can be accomplished in two years, one month, and nine days. Sorry.

Last week we had our six month check up with her neurologist. Last fall at her appointment, Dr. H said that if we went for six months without a seizure and if her EEG in the spring was normal, then we’d have a discussion about weaning her off of meds. We celebrated because it was huge news, and please understand that we’re still thankful for the two years of no seizures that she had. Going in to this appointment, I expected no problems. I’m sorry to say that I was a bit smug with it. I expected that her EEG would be normal because the last EEG was normal plus we had seven more months of being seizure-free.

Her EEG showed abnormality in the frontal lobes. It was unusual and concerning because in previous EEGs showing abnormality were different, with it being located in a different area. Dr. H told us that it didn’t change her diagnosis, and that she couldn’t go off medication until she had a normal EEG, which we assumed anyway. He said that it might just be a simple case of her brain catching up with her body, and we’d repeat the EEG in a year.

Leaving the appointment, I felt sick to my stomach. I just felt that there was more to it, and so I was probably a little more anxious about her health than normal. After talking to my husband on the way home from her appointment, I found that he felt the same way. We were both really worried about her.

The next day I was sitting in my third period class talking to my students and the student-teacher I have working with me this semester. At 10:59, my phone rang, and the nurse’s office from my daughter’s school showed on the caller ID. I just knew immediately that something was wrong. I answered the phone as my student-teacher took over my class. The nurse told me that Lizzie was in her office, and that she was complaining of all-over body pain, and she said she felt like there were “rattlesnakes in [her] arms.” I asked to speak to Lizzie, and I asked her about her pain. She also told me that her arms were very stiff, and her head really hurt. I told her nurse that I’d call my husband, since he’s closer, and he’d pick her up.

The Husband took her the emergency room at our local children’s hospital, and I made arrangements for my afternoon classes. I got there about fifteen minutes after they were checked in. When I got into her room, she was fine. The pain receded, and she could move her arms. I confess that I thought she was making it up to get out of school, but as I questioned her, I came to believe that she hadn’t been making it up. The nurses came into her room to do a blood draw, and to put in an IV. She was very upset and scared of the needle, and so she became very hot and sweaty as she cried. We calmed her down after it was done, and we were all sitting there talking. I asked her a question, and she didn’t respond. I called her name twice, and she still didn’t respond. I moved to her bed and said, “With everything that’s going on, you need to answer me when I ask you a question. Do you understand?” I could have been talking to a table for all the good it did. She simply wasn’t there. I realized what was going on about the time that she started to have a seizure. It presented in a way that was new to her. Her head turned to the left, but her eyes stayed facing front. Her head began to rapidly nod up and down, and her eyes started to move from one side to the other. Her arms and legs began to draw inwards, and she lay on her side, assuming a fetal position.

I told The Husband to call for help, and as he pressed the call button on her remote and they answered, I yelled, “SHE’S HAVING A SEIZURE!!” The room filled with nurses, EMTs, and two doctors. They began to give her rescue meds (versed and ativan). Her seizure wouldn’t stop, so they moved her into one of the trauma rooms. This went on for well over an hour and half. One of the doctors stepped away and told me that he was concerned that all the rescue meds were masking more seizure activity, and he was concerned that she was having a subclinical status event. He asked us for permission to use propofol and phenobarbital on her to get the seizure to stop and relax her. He then told us that she’d have to be intubated because of the medications.

It was then that I suggested that because her regular doctors were in Ft. Worth, maybe transporting her would be a good idea because of continuity of care. The ER doctors completely agreed with me. Please understand that it had nothing to do with me worrying about the quality of care she would have received locally. I have no doubt that she would have received excellent care. She just needed to be moved where her regular specialists are located.

The helicopter landed at 3:30 that afternoon, but it took an hour and half to make sure she was stable enough for the flight back. The helicopter took off at 5:00. She was admitted directly into the PICU at Cook Children’s in Ft. Worth. Her doctor called me about 6:15, and told me that he didn’t believe it was a subclinical status event, but he did believe it was status epilepticus, which is an unending seizure that requires major medical intervention through rescue drugs to stop it. It is always a medical emergency. He said that he would begin taking her off the propofol at 7:00, and let her wake up from the coma naturally. He said that once she was awake and it was clear that she could breathe on her own, and then her intubation tube would be removed.

She woke up at about 2:00 AM the next day. Her intubation tube was removed, and she continued to breathe on her own. She woke up for good around 7:00 AM. She needed to use the restroom, and tried to get up on her own. When we tried to tell her that she wasn’t strong enough yet, and she needed to go in her “hospital pants”, she yelled, “I WANT TO POTTY LIKE A CHAMPION!!!!!!” It was the first real laugh we’d experienced in hours.

She was moved to a private room at around 3:00 that afternoon, and she continued to improve. She ate four full meals that day, and was able to take her regular medicine in pill form. The next day my sister drove in, and Lizzie continued to improve. We took her to the Build-A-Bear Workshop and to the hospital-sponsor Easter egg hunt in the gardens.

She was released on Saturday afternoon, and we were given a prescription for Diastat, a rescue medication that we could give her at home or at school. I met with her campus leaders this morning, and we amended her seizure action plan. I spoke with her afterschool care providers, and made them aware of the situation. I’m going to provide them with a separate seizure action plan for her.

So, that’s the situation. As I’ve told people what happened, the question I hear the most is why. Why did this happen? What are they going to do make sure it doesn’t happen again? When are they going to find a cure for her?

I don’t know why this happened. We increased her medications, and the only way we’ll know it worked is if she doesn’t have any more seizures. I don’t know when they’ll find a cure. The government doesn’t give us nearly the money for research that they put towards cancer and HIV/AIDS. Most money spent on epilepsy research is raised privately through the Epilepsy Foundation or CURE. No, it’s not a perfect system, and yes, you’d think modern medicine could do better than that. I know. Believe me, I know.

She went back to school this morning, and while I know she’ll be safe there because they know how to take care of her, I’m filled with worry for her. I’m so afraid of what this means for our future. To stand there as your child has a seizure and to feel so helpless….it’s the worst feeling in the world.



So, there you have it.

Let's Pretend

Want to play a game? Great. Pretend your child has epilepsy, but is 100% controlled on medication. Then pretend that your child has an EEG ran, and it's abnormal. Got it? Great. Now, pretend that the next day your child has a status epilepticus event that lasts well over an hour, and massive medical intervention is required to stop it. Now, pretend that your child was put into a coma and flown to a hospital two hundred miles away.

That was my daughter today.

Purple Pumpkins!!

This Halloween I’m pondering doing purple Jack-O-Lanterns for our front porch. Of course, purple is the color for epilepsy awareness, and since, as the kids say, I’m about that life, I’m looking into painting a pumpkin purple. I think Liz and I will have a great time painting them and carving them. I’m excited about this little endeavor.

I’m wondering how to do this at a school level, and use them to spread epilepsy awareness. I’d love to sell little purple pumpkins to the students, but you know that wouldn’t end well. I’ve also thought about putting little purple pumpkins in the staff mailboxes, with a little note about epilepsy awareness month. The hope being that they’d keep them on their desks for kids to see. I’m going to keep pondering this. Hmmm….

In a weird twist of fate, I’ve been put on Zonegran to keep me from having headaches. If you’ll remember way back to Christmas 2010, you’ll remember that Zonegran was the medicine that Liz was on that made her develop kidney stones. I’m REALLY hoping that doesn’t happen to me. Fingers crossed. I’m honestly just hoping that my headaches improve to the point that I don’t have them. I’m already in such pain from the fibromyalgia, and I don’t need anything else on top of that.



Liz continues to do well, which is such a blessing. She’s living a normal 9 year old life, and I love that she gets to. 

Good News, And Yet, I'm Annoyed.

I really need to do better about blogging. It seems that I think of fifteen different topics to talk about, but by the time I get an opportunity to blog about it, I'm exhausted or preoccupied. I vow to do better.

So, the good news. Well, last week the kiddo had her bi-annual neurology check-up. It has been eighteen months since any seizure activity. The doctor wants to see her in February and do an EEG. He said that if it's normal, then after she starts her menstrual cycle, if she's still seizure-free, then we could start a timeline to ween her off her medication. I know there's a lot of if's to that statement. It's just...this has NEVER been a possibility. Ever. It was always understood that her seizures were severe enough that she'd always be medicated. Now there's a tiny possibility that she won't. There was much rejoicing at our house that night.

Now, why am I annoyed? I am acquainted with a number of families that have children with seizures. Recently, the daughter of one of these families came to me in tears. It seems that she's been experiencing seizures at school and kids are teasing her about them. I tried to help as much as I could. I told her that what she possesses inside her is more special than her seizures, and if they couldn't see her beautiful light, then just forget them. I don't know if it helped. I hope it did. It's just...where do people learn to be like that? How many times have I been at the store and been judged by those around me because my daughter is having a meltdown? How many times has she been called out for being different? Why is it culturally acceptable to make fun of people with special needs? Why is there still a stigma attached to these conditions?

The truth is that those that float the mainstream are missing out on one heck of a ride elsewhere.

You have to hang on to that light inside you, always. Don't let anyone ever take it from you because they've honestly not done anything to deserve it.

Seventeen Months

What is this?  Another blog posting from the elusive Epilepys Really Stinks Blogger?  Well, yes.

It's been seventeen months since Liz had her last seizure.  That's the best she's done in, well...ever, actually.  That's not to say there hasn't been issues, but I don't think they're seizure related issues.

In April, she experienced some, for lack of a better term, stuff that I couldn't explain.  Violent bursts of temper, emotional outbursts, and acting out in troubling (and weird) ways (Ex. I walked in on her spreading poop all over her bathroom walls and toilet.  She promptly was given a stern talking-to, and a sponge with some cleaner.).   I called her neurologist, and explained what was going on to him.  He suggested that we see a pediatric psychiatrist, since he didn't believe that her actions were related to seizure activity.  He said that in a lot of pediatric epilepsy cases, the children also experience psychiatric issues.  So, I got on the phone to the insurance, and made her appointment with the best pediatric psychiatrist in the area. 

Now ask me when her appointment is?  Big Hint:  Notice I didn't say "was".  It's July 20th.  Fact is, when you get an appointment with a good pediatric psychiatrist, you wait for your appointment.  In the meantime, she was still having issues, so I was faced with trying to find ways to deal with and cope with her chaotic bursts. 

This is going to sound absolutely INSANE, but I turned to acupuncture.  In January of this year, I was diagnosed with Fibromyalgia (which, by the way, also really stinks).  Instead of taking the nasty medications that my doctors wanted me to take, I turned to a more natural way of treating it.  I did what I do best, and turned to the internet to research ways to treat the pain and weird symptoms of this condition.  The one I came across consistently was acupuncture, so I did some more research and found an absolutely fabulous acupuncturist in our area.  I now see her about every two weeks, and when I told her about what was going on with Liz, she said, "Let me work on her!"  So, she did for three sessions, and it has helped SO MUCH.  Liz doesn't mind the needles, and at the end of her session, she can tell the difference in before and after.  She knows when she needs it, and I let her make the decision.  She still has bursts of odd activity and temper, but it's fewer and far between than it was before. 

So, that's the gist of it.  She's not had seizures in a LONG time, but she's still going through some weird stuff.  My fears get the best of me sometimes, and I worry that she'll be diagnosed with Bipolar Disorder or an anxiety disorder.  My gut tells me it's related to her ADHD diagnosis, but I'm, of course, not a doctor.  We'll see in a few weeks what the doctor thinks. 

Thanks for reading, and have a great 4th of July!!

Questions About Why I'm Not Posting

My darling sister asked me the other day why I haven't posted in so long.  Actually, her exact words were, "What's up with that?!" 

The fact of the matter is that my sweet girl is doing quite well.  The last time we had documented seizure activity was February.  She's progressed to second grade, and is doing quite well in her class.  In fact, in her parent-teacher conference, her teacher expressed that she is doing so well that she's on grade level for reading, and is progressing nicely in math.  We're all so encouraged this year.

Tomorrow starts off Epilepsy Awareness Month.  For an epilepsy advocate, like myself, it's arguably one of the most important months of the year.  You want to raise awareness.  You want to make sure EVERYONE you interact with is aware of seizure first aid.  You want to chase away stigma. 

I'm in the unique position of being the student council sponsor for my high school.  We've made it a project of ours to raise epilepsy awareness on our campus by posting seizure first aid around the school, and selling epilepsy awareness bracelets.

Please do what you can to continue to raise awareness where you are.  The world is not aware enough about epilepsy, what it is, and what it means for us as parents/friends/family members of people with epilepsy.