EPILEPSY

I recently decided to do a better job of journaling on our family blog.  Because time seems to picking up and moving something just shy of "hyper-speed,"  I have set a goal of journaling once a week to keep current on our adventures.  But before I start that, there are a couple of life events that need to be documented.

The first is that Lauren has epilepsy.  When I say that it feels like I'm saying, "Look at the pretty snowflakes" as the avalanche roars down the hill toward me.  I'm not really sure how to explain everything, so maybe I'll just take you on our journey over the summer.

I began noticing some odd behavior about the time LJ finished preschool, but it took some time before it really started to alarm me.  Lauren seemed to be day dreaming a lot, but I began to notice that at times I couldn't call her attention back through talking to her or touching her.  I also began to realize that she often missed a lot of things I was telling her.  This was especially strange since she has always been quick to obey or help when asked.  The more I paid attention to it, the more I noticed it and realized how frequently it was happening (several times a day).  

I had mentioned it to Russ and even asked his opinion about it, but we both dismissed it as "being 5 years old."  After I brought it up again, Russ encouraged me to call the pediatrician and ask about it.  I wasn't quite sure what I would say to the nurse..."my 5-year-old daughter seems to be day dreaming a lot..."  It sounded so trivial.

Then one day sometime in August, I was trimming Lauren's bangs and asked her to keep her eyes shut so she wouldn't get hair in them.  A few seconds into it, her eyes rolled open and her head went slightly limp.  I could tell by her eyes that something was definitely wrong.  It only lasted a few seconds, but it left me feeling uneasy.  

A few minutes later, she and Eleanor started playing a game where they were throwing a paper airplane back and forth. Lauren had an "episode" during which Ella took advantage of placing the airplane on the winning spot. Lauren's confusion and frustration was apparent.  At that point, I picked up the phone and called the nurse at the pediatrician's office. I left a message, but they returned my call right away and told me to bring Lauren over right then.

After a lot of questions and funny tricks performed by Lauren, the pediatrician told me that she was confident Lauren was having absence seizures, but we needed to see a pediatric neurologist right away. Seattle Children's hospital has a first seizure clinic where they get new patients in within two weeks.  We were fortunate (due to a couple of scheduling errors) to get in sooner.  The neurologist, Dr Ferri (pronounced "fairy" but, no, he did not have wings), and a neurology resident quizzed us for a time about Lauren's behavior and then made her do another set of silly exercises.  They then triggered a seizure by having her blow repeatedly on a tissue.  They said her symptoms were "classic" absence seizures and wanted to get her started on medication right away.  

Lauren's seizures are generalized, meaning they cause her entire brain to have an "electrical storm" of activity during which she pretty much freezes (or pauses as she describes it). We notice her having anywhere from 5 to over a dozen seizures a day (although I'm confident that we are missing many of them as well). The good news is that when young children develop this type of epilepsy, they usually grow out of it after a few years.  

They also had Lauren go to the hospital for an EEG to see if there where any unusual quirks to her epilepsy.  She was super nervous, but handled it remarkably well.  It took 20 minutes to get some 20-25 electrodes hooked up to her head before the test even started.  They recorded her brain activity while she did activities like blinking, counting to twenty and being blinded by a strobe light (which made me dizzy and have to look away).  They also had her blow on a pin wheel which triggered two separate seizures.  During them, the tech asked Lauren questions, told her to remember words, and shook her arm.  Once Lauren was done seizing, she of course didn't remember any of it.  They then told her to close her eyes and fall asleep. (She had to stay up until midnight the night before and then woke up at 6, so she easily complied).  While she slept for about 20 minutes, she had 5 or 6 seizures (I only know because I was watching the monitor record her brain activity).  Those were all things that I had been told to expect during her test. When Dr. Ferri called a few days later with the result, he said,"Lauren's EEG was abnormal," to which I responded, "Oh, good!"  There was a slight pause and we both started laughing.  It was abnormal in the way they expected it too be...which was good.  

Now, almost two months later, Lauren is doing very well. It took a few weeks of slowly increasing her medicine to get to her full dose and notice a difference in her seizures. Starting Kindergarten was especially hard for me, because she was still at risk for having seizures at times that could put her in danger. I feel very blessed that we were able to get her in when we did and get her medicine going far enough in advance that the transition into school ended up being great.

One of the interesting side effects of the medicine is that Lauren has an incredible amount of energy.  Eleanor is loving it because now she has a playmate that operates at her same extremely high level of enthusiasm.  Lauren is less reserved (loves chatting it up with the cashier at the store), much happier (sings and giggles and laughs all the time), and has all sorts of creative ideas (let's ride down the stairs on the sleeping bags).  Needless to say, it has been a learning experience for me.  Suddenly I find myself having conversations with Lauren about things like raising your hand before you talk in the middle of class, thinking about consequences before launching your body down the stairs.  I believe a lot of the energy and happiness is a result of the lack of seizures...suddenly life is a lot less confusing for Lauren.  And I am happy for that.