Emily's big brain update. It's a long one.

Last month Emily had a sleep deprived EEG as a follow up to her seizures from a couple of years ago.

(For those that didn't read my blog back then and are interested, you can read updates from that week here, here, here, here, and here)

The day before the test we had to keep her up until midnight, then wake her up at 5:00am the following the day. We had to somehow keep her awake until her 1:00pm appointment in Tulsa, Oklahoma. I was actually quite nervous to how the day was going to play out. Thankfully Corky was has a couple of vacation days left and was able to take one to help with shifts. LUCKILY the day before we were notified by the doctor's office that there was a cancellation and she could come in at 8:00am but stay on the same sleep schedule. We jumped on that. It was the late morning drive to Tulsa that I was most nervous about. I was afraid that she would fall asleep in the car on our 1.5 hour drive.

We have great neighbors who offered to let Gracey sleep over on the school night so she could just go with them in the morning. So we sent Gracey off and had quite the party with Emily. We took her on a late night ice cream run to Braum's. We played a mean game of Candyland. Then let her sleep in our bed for the 5 hours we were allowed.

The night time was easy and fun. The morning was rough. She was so sleepy.

After the car ride, which was full of popcorn and juice to keep us awake, we arrived safely to the office.

It took about 1.5 hours to get all the electrodes to her head and she behaved so well. She would start dozing off but we were able to keep her awake with lots of coaxing.

I snapped this picture just before the EEG was about to start.

It was a 20 minute test that consisted of 4 parts.

She had to sit perfectly still for about 4 minutes, which she did wonderfully.

Then she had to hyperventilate for 4 minutes, which was stressful. We were told the goal was to keep a toy windmill turning the whole time. She looked like she was going to pass out a few times, literally. Her eyes rolled back a little and Corky or I would hold her back. We would do that all while we insisted that she keeps blowing. We wanted there to be no reason the test wasn't clear.

After that part, she had to stare at a disco light (that's what we called it) for a few minutes.

Finally, they wanted her to sleep. Once she was given the okay to go to sleep she was out in about 15 seconds. She was so incredibly tired.

I took this picture after the test was over and all the electrodes were removed.


The technician wasn't able to tell us if she had any seizures at this time but was able to tell us that the quality of the test was really high. We were happy that the neurologist would be able to give us a correct update on how she's doing.

We got a call saying that the test came back showing she still had signs of seizure activity in her brain and so we were advised to make another appointment. We went on Tuesday (Nov. 9, 2010) and it was very informative.

I wasn't sure at the time, but I kind of had a feeling that she had a tiny seizure during the disco fever portion of the EEG. She just stared at it and I thought I saw the same cathartic look in her eyes that she had during her other seizures a while ago. I was surprised to be told she had 2 little seizures during the hyperventilation portion. So those times that Corky and I just thought she was light-headed, she was actually having a mini-seizures.

Anyway, it is all very interesting. She will continue on Keppra, her anti-seizure medicine, for at least another year, then we will do the EEG testing once again. Her medicine was adjusted, but only because of her current weight and height. He said the risk of her having more seizures has significantly dropped but this medicine is simply a protection. Our insurance covers it for the most part so why not give her some more time to be seizure-free before taking her off it completely.