Re: [epilepsy] Introduction & questions

 

Hi Andrea,

Why is she on the sprinkles? I was diagnosed at 16, but was put on the regular Depakote. Another thing you're going to want to think of now is hormones. They do a number on women and their seizures. I take progesterone losenges in addition to my medication, as my body doesn't produce enough of it, and progesterone naturally prevents additional seizures. Things like estrogen-based birth control (which is great for helping with your period, acne, etc...) can actually trigger seizures.

Just a few things to keep in mind, along with those dreaded teen years!

elizabeth

----- Original Message -----
From: advocating4autism
To: epilepsy@yahoogroups.com
Sent: Tuesday, April 26, 2011 10:36 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

[Non-text portions of this message have been removed]

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