Monday, February 2, 2015

EEG Results

Allie had her check-up EEG today, which was recommended by her new neurologist.  The hope was that she could come off the medication since she's been seizure free for three years.  Unfortunately, after seeing the results, that's not in the cards right now.

Jonathan took her to the test today all by himself.  She had to be "sleep deprived" going into it so she got to extend her bedtime by 2.5 hours last night and stay up until 10pm.  Of course this meant that by the time 10 o'clock rolled around, she was as hyper as she could possibly be.  She was bouncing off the walls.  Since she and Andrew share a room, he woke up while we were trying to convince her to get and stay in bed.  He then surprised us by standing up in his crib for the first time.

We were taking photos and awing him but Allie was a little envious of the attention.  She then decided to show us how she could stand on her bed too... and jump... while singing.  It was like a circus.  We finally just left the two standing chatting children to fend for themselves and we went to bed.  Allie kept yelling "Mommy!!!!  Andrew isn't laying down!!!" Without the audience, they went to sleep pretty quickly.

Allie had to get up early so I swooped her into bed with us.  She enjoys telling us how bad our morning breath is.  "Your breath smells like compost!" she says while dramatically plugging her nose. She's yet to realize that she's not exactly a bed of roses herself.

I took Andrew to school and I went to work while Allie and Jonathan went to the appointment.  I soon got the following picture and text from Jonathan:

"She got in as soon as we arrived and she farted so loud I swear she [pooped] her pants!! 
Everyone heard it."

She looks rather proud of herself, doesn't she?

The neurologist had smartly booked two back-to-back EEG slots for Allie in case she had some trouble settling down.  They really want to see her brainwaves while she's sleeping but getting an almost 4 year old to sleep on command is easier said than done.  An hour and a half into her hour long EEG, I got a text from Jonathan saying that she just fell asleep with the help of some Benadryl and the technician was finally able to get the leads on her head.  That must have been a long hour and a half.

Once the test was over, they woke Allie up and she and Jonathan headed home.  The poor girl has been sleeping most of the day since then.  I had no idea Benadryl would knock her out so much.

We were told that it could take up to a week to get the results, but we got an email from the neurologist within a couple hours.  Here's what she said:

"[The results are] showing some seizure risk which is not surprising and may remain abnormal because of the MCA stroke.  The purpose of getting the EEG was to assess the seizure risk and it is mild-moderate and not significant.  If she does not have clinical seizures or indirect evidence of having subtle seizures (delay, stop making progress, etc.), we will continue to observe her and sit tight."

So, after much stress, we will keep Allie's medication dosage the same and continue to hope for the best.

I'm still trying to figure out how I feel about the whole thing.  Of course knowing what's going on in her brain is better than not knowing, but having to actively think about seizures and seizure risk again has brought back a lot of unsettling emotions.  It's so unfair that she has to go through this.  It is scary to think that she could start having seizures again.  How did we get so lucky to find a medication that works for her, doesn't have any noticeably side effects, and she doesn't mind taking twice a day?  It's this weird combination of feeling so lucky that we don't have to deal with seizures right now and having so much fear about them coming back.

For now, we'll just count our blessings that she's doing so well.

1 comment:

  1. Thanks for the quick update, Michelle. I know this is all pretty scary remembering back to the original seizures, but I feel really positive that she is going to be just fine and those problems are behind her. The photos are darling of both kids. Must have good looking parents!