Wendy,
Everybody has to find the med that works for them. Just because Dilantin and Phenabarb work for
me does mean it will for someone else. And it may take a few weeks or months to know if the med
you are trying will for work you. If that one doesn't work-- you try another or add one. The brain is a
strange part of our body -- but that is just the way it is. There doesn't seem to be any rhyme or reason.
Millie
----- Original Message -----
From: Wendy Baur
To: epilepsy@yahoogroup
Sent: Wednesday, April 21, 2010 8:04 AM
Subject: [epilepsy] considering surgery...thoughts?
All,
Julia is now 2 years and 6 months old. Julia was born with a
brain tumor that gave us infantile spasms we got those under control
with vigabatrin (not FDA approved but, we got on a study). Julia is
currently on vigabatrin 325 mg/day, 300 mg/day of Lictamal and 250/day
of kepra and Julia's seizures are STILL out of control 3 - 4 a day and
each seconds to 30 minutes in duration they are myoclonics and she
doesn't turn blue so we give diastat at the 30 minute mark. We were
going to John's hopkins but, they weren't agressive enough in my
opinion throwing different drugs at us isn't good enough for me.
Honestly I think there should be some form of rime or reason why a
specific drug is given over another and I am not happy given choices
between drug A and B. I am a software engineer which is the
furtherest thing from medical / drug knowledge so, how should I know
if drug A is better then drug B for Julia.
We took Julia to Children's in DC on Monday and now have a
plan..Finally a 23hour VEEG scheduled for 7 May. We know that Julia's
seizures are focal so, we're on our way to surgery I hope. I would
like to hear form those who have had surgery. How did you feel after
surgery? Were you in pain? What helped your recovery? How long has
it been since your suregery and how does your surgery area feel now?
What did your doc say about seizure control after surgery (ie chances
of 100% control 90%, 80%). I know 100% is a pipe dream and honestly
I would be happy if I saw 1 seizure a week.
Thanks TONS!!
Wendy
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