Andrea,
Currently,I'm on three(3) Vimpat 100mg tablets alongn with two(2) Keppra XR
500mg, both are taken two times daily.Frequency of my partial-complexs is 1
seizure at 3-6 mo..For 30 yrs,it was always 1 every 3-4 weeks.It didn't matter
what of 30+ medicines I attempted or was trying. Tim Baldwin
________________________________
From: advocating4autism <andrea.mcginley@yahoo.com>
To: epilepsy@yahoogroups.com
Sent: Tue, April 26, 2011 10:36:20 AM
Subject: [epilepsy] Introduction & questions
Hello everyone!
I have a beautiful 13yr. old daughter with LGS. She has suffered from seizures
since birth. We have gone through a multitude of medicines, Ketogenic diet and 2
implants of the VNS over the years.
As of right now, she is on Depakote Sprinkles and Keppra with a back up for
status seizures of Diastat. She also receives a hormone shot that helps with
seizure activity. Current seizure activity is 1-3 grand mals daily and 30-50
petit mals daily.
Here are my questions:
1. VNS: Has anyone ever gone beyond the 50% range on the VNS with the duty
cycle? We had a new battery implanted last year and are already at 44% with the
duty cycle and several neuros have said we are pretty much maxed on that aspect.
There is room for interrogation on the other settings.
2. We are introducing Vimpat(lacosamide) to the already existing cocktail of
Depakote and Keppra. Anyone have any input on this fairly new med?
3. We have been thriving for seizure control since infancy for 13 years. How
does a parents decide when it's time to stop tormenting your child with
treatment changes and just accept the amount of seizures happening to be
acceptable with a diagnosis of incurable LGS?
Thank you for your time and input.
Andrea
Mother to Laura
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