We continue to explore the genetic cause of Savanna’s epilepsy. Our local genetics group has given up. At first, I wondered why they ended the relationship on their terms, which was a bit unusual considering our experiences.
We engaged a lab at the University of Arizona that has a particular interest in these scenarios, and helping families like ourselves. We are on the cusp of receiving their findings, although I have been notified in advance there is little to share that is different from facts already known. Very disappointing considering the out of pocket money invested even though we knew this may be the result.
Shortly after receiving that communication, I saw this blog post. I cannot say ‘the light went on’, but I can say my laymen understanding of our situation has been enlightened.
Fall colors. Just a brief summary of how this post originated. Eckernförde is a small city north of Kiel and the weekly Sunday destination of my daughter and me because of the wave pool. This past Sunday, daylight saving and the fact that she didn’t like her dinner had confused the little girl, and we had been awake since 4AM. As a consequence, she fell asleep on the way, and I kept driving to let her sleep. We made it as far as Haddeby, and I used this time to mentally put a post together that I had been planning for some time. These are the three things that are often misunderstood with regards to epilepsy and genes.
View original post 889 more words