Epilepsy Advocates Conference

We got a flyer in the mail about 2 weeks ago inviting us to the Epilepsy Advocates Meeting. For those that don't know, Epilepsy is diagnosed in anyone who has had more than 2 seizures in their lifetime. So, Lincoln definitely qualifies as an Epileptic. Technically, he is a Symptomatic Epileptic, which means that we know what causes his seizures. It was interesting to learn that 70% of all people with epiliepsy are idiopathic, meaning there is no known cause for their seizures. One year, 1 month, and 22 days ago we were desperately hoping that Lincoln fell into that group. But alas, Lincoln's first MRI on 9/17/08, confirmed that there were indeed structural problems in his brain that were causing the seizures. So knowing where we stood with Lincoln on the seizure spectrum...what did we learn from this conference...? Well, not much actually. The whole thing was geared more toward adults and adult's caregivers dealing with epilepsy...not so much anything about children, or children with developmental delays.

The guest speaker, a neurologist, epileptologist, and professor at the U of A was interesting and funny. But one thing that he did present was a slide with a pie chart on it. I don't think I will ever forget it... It showed the people with epilepsy; 50% are controlled with one medication, 11% with 2 meds, and 4% with a variety of different meds. Those that remain are 35%, of all people with epilepsy (in the USA I am assuming), who are pharmacologically resistant. Now at first this seemed to make sense to me. We were still trying to find the one or two meds that really get Linc's seizures under control, right? Well, then the doctor said that when new patients come into the office, they figure out who will be in that 35% group pretty quickly because those inital 50% of people respond to the very first med. they are put on, not just one med, but the very first. Then he went on to say that this only leaves 15% of people who will ever in their lifetimes, get control of their seizures, and the rest will continue having uncontrolled seizures forever. When stated that way, it really leaves us very little hope for controlling Lincoln's seizures in the future...especially with the number of different meds and combinations of meds we have already tried.

Honestly, I wish we hadn't gone to that meeting. Being 19 weeks pregnant, I am way too emotional to hear people's stories about how hard it is to live with epilepsy and all of the meds, and how difficult Linc's life will be, and how we will never truly understand what he is going through. It is heartbreaking to hear those words, and as his parents know that we can't fix this for him. I was in tears several times throughout the night. I doubt that we will be going to another one of those for several years...