Thank you Malgorzata for replying to my posting.
Laura started having infantile spasms within weeks of birth. Then started developing other forms of seizures. Myoclonic, febrile, petit mal and then around 3 years came grand mal. She was diagnosed then with Lennox Gastaut Syndrome. Besides her seizure disorder she is also diagnosed with low functioning autism. In the early years of life we went through a gamut of metabolic disorder testing due to the seizures but since all were negative and she has over 3 different types of seizures the diagnosed her with LGS.
Thanks again for your time.
Andrea
--- In epilepsy@yahoogroups.com, Malgorzata Wolak <malgorzataqueen@...> wrote:
>
> Hello .
> I would like to ask why she has seizures from birth , did you ever received an answer from a doctor ? Many things could be in a question zone but answers to them is the way to find the right correction . If you don't mind to tell me that I could have a better answer for you .
> In the mean time God bless ....my son is recovering from all of that slowly...
>
> --- On Tue, 4/26/11, advocating4autism <andrea.mcginley@...> wrote:
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> From: advocating4autism <andrea.mcginley@...>
> Subject: [epilepsy] Introduction & questions
> To: epilepsy@yahoogroups.com
> Date: Tuesday, April 26, 2011, 2:36 PM
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> Â
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> 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.
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> Here are my questions:
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> 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.
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> 2. We are introducing Vimpat(lacosamide) to the already existing cocktail of Depakote and Keppra. Anyone have any input on this fairly new med?
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> 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?
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> Thank you for your time and input.
>
> Andrea
> Mother to Laura
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