Wednesday, December 29, 2010


we figured a first-ever ekg goes hand in hand with a first-ever eeg. mostly we just love spending our vacations at doctor's offices. this test was recommended to determine if leah has any seizure activity. we aren't really sure. and if she does, they at least aren't bad enough to harm her daily activities in any way, but we felt it was good to have a baseline or  to determine if there was anything going on that we couldn't see. 

i called the office monday morning to see if there were any special directions for the procedure wednesday morning. did she need to fast? be awake? be tired? bring comforting items? you never know. and it's a good thing i called because apparently this was a sleep deprivation eeg. she needed half as much sleep the night before as she normally gets. so rachel kept her up while ryan and i gorged on filet and cheesecake. we rocked her to bed at 11pm and tried our best to wake her up at 5am. it took a few minutes, but she did it. at 10 am when it was time to start, she peacefully passed out in ryan's arms as nurse josephine poked, prodded and glued the nobs to leah's head {i think i counted 23?}. 

oh yah, and ryan passed out too.
i tried to get info from nurse j about the activity on the screen, but she was a closed book. she assured me the spikes i was seeing were sleep patterns and told me the neurologist would be able to read it for us. but she was typing like crazy. 

luckily, a friend warned us that a regular neurologist will look at an eeg from a girl with rett and flip out. a rett neurologist will just say it's a "brain on rett." so, once we can get past that {because i'm certain her brain activity isn't normal}, we'll see if there is any other unusual activity going on. results to come soon and we're hoping for the best!

p.s. leah left with an awesome hairdo. and we all came home and slept.


Ann Marie said...

Yeah, I'm not sure if the tech's know what to do with a brain on Rett. When Abby had her first one, the tech called the neuro on his cell in front of us and said "you've got to see this. They are spiking all over". Just what I wanted to hear. The neuro, of course, was not at all surprised.

I'm glad Leah tolerated the test. I hope you get good news-and quickly. I hate waiting for results.

JourneyBeyondSurvival said...

I'm so glad that you had someone help you with the test. We didn't know what to do and our neuro freaked. OUr daughter was on anti seizure meds until the Rett Syndrome Natural History Study Dr. Kwajara let us know that she shouldn't be on it unless she was actually having seizing activity.

It took a lot of talking but I finally convinced the neuro with a 24 hour EEG. We repeat it every 6 months to a year to keep her happy. :)

I'm so glad she doesn't have to take the anti seizure meds right now. They sucked.

Dr. Kwajara said, "almost 80-90% of Rett children have an abnormal EEG by 3yo. But, many of them won't experience seizures until much later"

Such a relief! Hoping for you...