Newbie to the forum, but not new to dealing with seizures.

Hello everyone. My name is Dawn and I am the mother of a 17 y/o special needs child with Lennox-Gastaut. Seizures are a part of our daily life. While I do not have seizures myself, I've been dealing with my daughter's seizures for almost 18 years. I have to admit, that in the beginning, seizures were the least of my concerns. Her first seizure was at 8 months old. However, on average, she had, maybe, one seizure every couple of months. They were controlled with Dilantin. She was on Dilantin for 8 years. At 8 though, her seizures started coming more frequently. She would have several a week. The doctors started changing/adding meds. In 4 years, we had tried every drug on the market and some that were in trials. Nothing seemed to work. By the time she was 12, she would have up to 300 seizures a day. It was no longer safe for her to even go to school, though she was in special education. She also has other medical issues, the main one being Trisomy 9p, though that is not the cause of her seizures. We had already tried the VNS implant, with no success. By the time Taylor was 13, she was hospitalized in a vegetative state due to constant seizures. The doctors then suggested a corpus callosotomy. She had that done in 2003. A few days after the surgery, she had a stroke. After several months in in-patient rehab, I'm happy to say that she has almost fully recovered from the stroke. Unfortunately, the surgery did not leave her seizure free. On a bad day, she will still have upwards of 100 seizures a day. A good day is less than 50. I can say that the surgery did lessen the violentness and longevity of her seizures. Most of her seizures are now 30 seconds to 1 minute in length. Developmentally, Taylor is still a toddler. This is not because of the seizures, but I think sometimes that it's a good thing she is that way. She does not have to deal with the stigma of being a teenager with a lot of seizures. We did have a bad neuro appointment yesterday. The seizures are killing off brain cells and the doctors can not give us a "time frame" of how much longer she will be with us. I do count my blessings every day. Taylor is a very happy and loving child. We were told when she was a baby, not to expect her to live past the age of 1 year. This year, she celebrates her 18th birthday and I think the world is a much better place because she is in it. Thank you for letting me get this out, Dawn, mom to Taylor Marie, 17, Trisomy 9p & Lennox-Gastaut syndrome