My daughter (now 15 years) was a very
active and normal child. .She had a very
normal development until she became 11
years. 4 years ago she began having
seizures in her sleep. It took us
several months until we realised that
something wrong was happening because it
also happened once during the day... At
the beginning we thought these were
nightmares .During the night, always
between 1 and 3 am she used to scream
loudly, sit up in her bed, had a
frightened and fixed gaze. It lasted
around 15-20 sec. She was right away
awake and asked:”what happened, why are
you here?” these seizures happened 2-3
times a month. Sometimes twice a week.
During the day she had only two seizures
during a year. It always began with a
tingling in her left hand, the same
screaming, fixed gaze and all ended with
slobbering……she was not aware of us
and didn’t respond to us. It also
lasted around 15-20 sec. Then again the
same question, what happened, where am
i... In june 2002 we were in a paediatric
hospital and made all checkups: eeg, mri
and pet nuclear scan. Everything was
normal; they could not find the origin.
But still the diagnosis was: complex
partial epilepsy! So we started giving
her trileptal (oxcarbazepin). In the
first week the seizures during her sleep
stopped immediately and she didn’t have
any complex seizure since then during the
day. Unfortunately she is not responding
well to medicines, the tingling in her
hand (2-3 a week about 15 sec.) didn’t
stop, although we tried many drugs .The
neurologists say we have to get the
tingling under control or else she may
have a complex seizure or even a gm. 2
years ago the neurologists suggested a
surgical operation. She was at the
university hospital and had all the
examinations again: eeg, mri, pet…. The
professor told us they can’t do an
operation because they didn’t find
anything
these are the medications she got since
june 2002, always a very high dosage:
trileptal
(oxcarbazepin), epilan-d (phenytoin),
lamictal (lamotrigen), convulex (valproic
acid), topamax (topiramate), keppra
(levetiracetam) and since june
2005mysoline (primidon). Dose anyone have
experience with the side effects of
primidon? She seems to be very sleepy and
we have still to increase the dosage in
the next weeks. School is beginning in
sept. I hope she won’t be too tired.
Tamara is good at school, speaks 5
languages, dances ballets and plays
tennis. She is aware of her condition and
tries to ignore the side effects and live
a normal life. Whenever her hand tingles
she sits down and waits till it stops.
I am very worried because we tried many
med without having success, I am so
discouraged…
two months ago she started taking
mysoline. In the first week she slept the
whole time.
That’s why the doc wants to increase
the med very slowly. I hope it works this
time.
Thank you for your help
sarah
vienna
