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.