When my son was diagnosed w/ LGS, we did not get the full spectrum of his disorder. It was as if they gave us a two sentence run down and our options. It has been a year and a half since we got this diagnosis, and we are STILL struggling trying to fully understand it. Just when you think you've seen every seizure there is, a new combination comes about. But, you know what my worst fear is? SUDEP. Every night when he has those horrible tonic clonics, and the alarm on the O2/SAT monitor starts blaring, I am terrified wondering if this is the one. No one understands, except the caregivers and the patients. The doctors even struggle understanding. ((hugs)) Laura
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From: Jeff Stewart <jeffro7946@yahoo.
To: epilepsy@yahoogroup
Sent: Sunday, June 7, 2009 10:16:12 AM
Subject: Re: [epilepsy] New Here
Nancy
My daughter is 6 and has 3 difrerent types of seizures she started having seizures in September of 08 she has had many seizures over this time been in epileptic statis we are on the mad diet right now and she seems to be doing good at the moment I have also takin aspertane nitrates and msg out of her diet
Keena
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From: Nancy Livesay <nlivesay1801@ yahoo.com>
To: epilepsy@yahoogroup s.com
Sent: Friday, June 5, 2009 10:58:25 AM
Subject: Re: [epilepsy] New Here
This is weird becaisue my dr did not say that I could hav different types of seizures. He just said complex partial. And a lot of times my simtoms are diffrerent. I do not understand.
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From: shandril18969 <shandril18969@ yahoo.com>
To: epilepsy@yahoogroup s.com
Sent: Thursday, June 4, 2009 4:06:23 PM
Subject: [epilepsy] New Here
Hi!
My son has been recently diagnosed with a Generalized Seizure disorder. I'm so scared because he's had three since January. Keppra hasn't yet controlled it. He has different types, though I really don't know the types other than his obvious tonic ones at night.
I don't know what I'm going to do if we can't fix him. He's everything to me. He's 3 years old.
If it was LGS or something horrible like that the dr.s would be saying so, right?!
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