To Blog or Not To Blog?

...that is the question I am dealing with lately regarding an issue that has me full of emotions. raw emotions full of tears, anxiety, and fear of the unknown.

For 30 min. I have typed, erased, retyped, erased, typed again, erased...you get the idea...and still have not figured out how to put this into words.

I'm just gonna put it all out there via a good 'ole timeline.

mid-June 2011: During our trip to FL I noticed that Izzy had a couple episodes where she would zone out. It happened late in the day, and I wrote it off to her being overtired. (but a seed had been planted in my head because something about the way she looked just seemed off)

July 21, 2011: Izzy and Drew were playing chase through the house and she stopped running she "had the look". I repeated her name and shook my hand in her face and got no answer/reaction. After she "came to" I asked her if she heard me say her name or saw me shake my hand. Negative.

After this episode I began to document her episodes and made a couple comments about it to friends. Pete had yet to witness an episode (my term for what was happening) but I felt certain that something wasn't right. I called her pediatrician and got an appointment for her on July 25th. I can't tell you how thankful I was that Pete didn't think I was crazy (or if he did he didn't vocalize it to me) and just supported my quest for answers.

July 25th: I explained the episodes to her pediatrician and told her that Izzy would "zone out" or appear to be daydreaming for 5-7 seconds. During these few seconds she often could not hear me or see me, but sometimes she could see me, but not hear me. At no time could she speak back to me. It was if a glazed look came over her and she would stare into space and almost look as if she was going to get sick. The pediatrician confirmed what I had already figured out: Seizures. Epilepsy. More specific CAE (childhood absence seizures). We were scheduled for an EEG.

August 4th, 2011: Izzy had an EEG. I had to keep her up the entire night before (truth be told we slept from 12:30-4:30) and her appointment was at 8am. We got situated in a dark room and Izzy looked all sorts of freaky with electrodes coming out of her head :) While under observation she closed her eyes and counted backward from 10; watched a series of bright lights flash in her face; blew on a pinwheel, and finally watched tv.





Results: 2 seizures while blowing on the pinwheel.

August 11th, 2011: we met with a pediatric neurologist at the children's hospital. He confirmed the seizures and suggested medications. I was already a bit familiar with the various medications and side effects. We went through all sorts of crap we needed to know and said we would meet again in 3 months.

August 12th, 2011: Izzy met her first grade teacher and I shared with her the fantastic news that Izzy has been having seizures. I am sure I talked a mile a minute and made no sense since it was all "new news" to me. I explained to her that Izzy's seizures would not be recognized by the kids, and possibly not even her if she wasn't looking at Izzy. I also told her that my goal was to get Izzy adjusted to 1st grade for 3-4 weeks before beginning medications. What I really needed was for Izzy's teacher to get to know Izzy and her personality/nature so that she would be able to inform me of changes/side effects once we started the meds. I had/have so much anxiety about putting my daughter on a medication with known crazy side effects and then turning her over to another person for 8+ hrs a day.

Today: I have come to the decision that it is in fact time to start Izzy on the medication. It is earlier than I would like, but we have witnessed an increase in Izzy's seizures. I think first grade it challenging for her, and while she gets 10 hrs. of sleep a night she is still quite tired. I have struggled with this decision because I really don't want to medicate her. I was hoping that with enough sleep, and the fact that the episodes usually occur later in the day that we could avoid medicating her all together. However, today I watched her space out on me and nearly walk into traffic after I picked her up from school. I was naive to think that she would be "safe" at school and the worst thing that would happen might be a fall off the monkey bars? Clearly I was delusional!

Tomorrow we begin the medication. I write this because I think this blog might soon become my outlet for all sorts of crazy. The outlook for CAE is promising in that she should outgrow them. However, my biggest fear is losing the Izzy girl that I know. She is honestly one of the nicest, kindest, sweetest kids I know! As my stepdad says, "Izzy is magic!" She really is and I am terrified that the Izzy I know will be lost once we begin the medication.

...only time will tell...