I got a call from Carter's neurologist today. His EEG is unchanged. Not unexpected but still upsetting. Our next step is to have a meeting with his neurologist and the epilepsy Dr. We are at a stand still with the Lamotrigine and will now start the increase on Vimpat.

Today is the first day I researched ESES on the Epilepsy Foundation website, I had been fearful of what I might find , but this afternoon I felt I was ready. WRONG! What I found was heartbreaking. I read about a girl who had brain surgery because her ESES had caused a regression with no hope of returning to normal intellect in sight, that story also expressed that there were no medications that would correct ESES. I didn't check the date on that but it may have been from a few years ago. I read about another child who has ESES and was regressing so much to the point where he was just spratically spitting out words or phrases not making much sense most of the time. In all cases I read about today, all of the kids were a grade or two, if not more, behind intellectually. Carter is dealing with those issues right now, as well as anger and behavior issues. It is hard to tell which is directly related to his condition and which is him just being an 8 year old, but in all my reading this afternoon I believe the majority of it is in fact the ESES. One father was just so upset over his sons outbursts and anger and begging for relief from it all. I am not at that point with Carter yet, but I am fearful that I will be in the somewhat near future if we don't find a medication to correct this. On the upside of my research, many cases I read about were being treated with different medications than Carter, and they are correcting the ESES! So keeping that in mind I am hopeful that we too will find the right medication for our Carter boy.

I read a post today by someone who has a child suffering from ESES that stated : " this isn't just a diagnosis for my son, its a diagnosis for our entire family ". This is so true, our entire family is affected by this condition and I am extremely blessed to have such a wonderful support system. I am also so very thankful that Ryan , Holly, myself and JR can all get along and work together to help Carter through this.

Have a great weekend everyone and Happy Spring!