I just thought I'd give out a quick intro here.
My stepdaughter is the one who is physically suffering with epilepsy. I say physically because us as a family suffer also. I know that probably sounds wrong to say. By that I mean, I suffer by sitting back feeling so helpless, so useless. We have our good and bads. And some days you just don't want to breath in fear of the wrong move making things go worse.
My daughter is 16 years old. she was diagnosed with petit mal (think they're called absence seizures now?) when she was 8 years old after having her first seizure. And of course, the first was a grand mal. I didn't actually meet my daughter until a couple years later. And shortly after that, she moved in with her birth mom.
Medical history has been a drag. She moved back in with us Feb. 2010 and I couldn't be happier (ok I could, but in regards to epilepsy I couldn't be happier). Once she moved in with us I got right on track in finding her a new neurologist. Tracked down all her past doctors (I have a cabinet full of records now!). We were working with that doctor for a while until he felt he reached the end of his expertise. With him, we tried more medicines then I can remember to count. He referred us on to an epiletologist (sp?) who has been wonderful.
With the new specialist we were able to find out that her seizures are located all over the brain, they are genetic and she has them more often then we realize. He said according to the VEEG that some were so fast that only the monitor could catch them.
Today we are still at war with finding the right medicine combination. But hopefully that won't last much longer. The doctor did say she was not a candidate for the surgery for was perfect for a VNS if it came down to it. We have one more medicine to try before we move on to such a risky option.
I guess that's about it. As I said before, I'm not walking away from with battle without us in the winner's corner. I'm even doing what I can to raise awareness on epilepsy. I'm sending a sock monkey around the world to help inform others of this terrible disease.
And there I go rambling...(it's a bad habit of mine lol)
My stepdaughter is the one who is physically suffering with epilepsy. I say physically because us as a family suffer also. I know that probably sounds wrong to say. By that I mean, I suffer by sitting back feeling so helpless, so useless. We have our good and bads. And some days you just don't want to breath in fear of the wrong move making things go worse.
My daughter is 16 years old. she was diagnosed with petit mal (think they're called absence seizures now?) when she was 8 years old after having her first seizure. And of course, the first was a grand mal. I didn't actually meet my daughter until a couple years later. And shortly after that, she moved in with her birth mom.
Medical history has been a drag. She moved back in with us Feb. 2010 and I couldn't be happier (ok I could, but in regards to epilepsy I couldn't be happier). Once she moved in with us I got right on track in finding her a new neurologist. Tracked down all her past doctors (I have a cabinet full of records now!). We were working with that doctor for a while until he felt he reached the end of his expertise. With him, we tried more medicines then I can remember to count. He referred us on to an epiletologist (sp?) who has been wonderful.
With the new specialist we were able to find out that her seizures are located all over the brain, they are genetic and she has them more often then we realize. He said according to the VEEG that some were so fast that only the monitor could catch them.
Today we are still at war with finding the right medicine combination. But hopefully that won't last much longer. The doctor did say she was not a candidate for the surgery for was perfect for a VNS if it came down to it. We have one more medicine to try before we move on to such a risky option.
I guess that's about it. As I said before, I'm not walking away from with battle without us in the winner's corner. I'm even doing what I can to raise awareness on epilepsy. I'm sending a sock monkey around the world to help inform others of this terrible disease.
And there I go rambling...(it's a bad habit of mine lol)
