Well friends, the honeymoon is over and we're very disappointed. Rachel
is having a new type of seizure, one where she has an aura and is aware
of what's happening for much of it.

These are the 'pauses' that I originally posted about a few months ago.
In the last month they have increased dramatically and are getting more
and more intense. My fear is that they will generalize and Rach will end
up without control again.

I am calling the children's hospital Monday morning to set up a date for
a 24 hour VEEG, hoping to catch one of the pauses. I don't have
particulars yet about whether we have to keep her up, etc., but if she
performs the way she has been in the last couple of weeks, it won't be
necessary.

It seems that all she has to do is be startled to go into one of these
seizures. Last night she was chasing a fly around the house with this
little hand-held zapper. She cornered it above a door and I heard the
ZAP! She turned to me, said she was having a pause and I led her to a
chair. She began to drool, her head dropped and she became non
responsive for about 30 seconds. When she was able to fully sit up again
she reported not feeling well and then just started to cry.

It took her about an hour to start feeling right again, but she insisted
on reading to me before bed and did a great job with the difficult words
in Harry Potter, so I know she was okay. She asked what had happened and
I told her she had had a seizure. Rach was so upset, saying that she had
gone over a year and only had about 9 months to go.

I've been tracking all these events on a calendar and will add this
latest one, too. I hope we can get in very soon. I also need to get a
refill on the Ativan prescription. Ours is old because we haven't used
it in so long.

I'll update when I know more.

Kelly C.