to Liz on seizures
Gary Shuman (gshuman@ix.netcom.com)
Fri, 29 Mar 1996 14:50:53 -0800
Liz, Thanks for the feedback. The Grand Mal seizure Carly had on the
bus was the only big one she ever had. The rest were petit mal or
Temporal Lobe seizures. She began depekene when she was 4, and we were
told this was not epilepsy but a seizure disorder common with children
that experienced some sort of insult to the brain. She was to grow out
of it in a few years.
But she continued to have periods of "spacing-out" and forgetfulness
that we attributed to childishness. She had a third EEG at age 8 and
deemed clean so we discontinued the medicine and began Ritalin. Of
course the Ritalin did not help the seizures. She began having dramatic
twitches with her left arm and sometimes both arm and left leg. Back we
went for another EEG. This time we were told she was having seizures
every 60 - 75 seconds increasing during sleep and visual stimlulation.
Curiously she never lost control of her bladder or bowels. This time
the neurologist definitely diagnosed her as epileptic and began her on
depakote.
The medication makes a world of difference. She feels "more here"
she says, like she does not keep spacing out. She's calmer and less
impulsive. I know you can relate to the disassociated feeling of not
always understanding what's going on. You feel like you're missing
something and it makes you antsy. We're so glad we don't have to give
her the Ritalin too. She has seizures if she misses maybe 2 doses but
that's hardly ever (she takes it twice a day). She has not had an EEG
since she began depekene so we have no current frame of reference.
You sound like a brave lady. You're words are an inspiration.
Obviously you have learned to give to others and take joy in it. Love
to hear from you again.
Stacey, mom to Carly 10 amd Dustin 9