I have had some time to reflect on this new diagnosis. A part of me is glad that we have a name more than just epilepsy, but then of course, part of me is scared of the future.
I want to say that first, Stryder has been a fighter and has over come so much. Stryder’s story is a long one and without everything that he has been through already, things would be much worse right now. Landau-Kleffner Syndrome (LKS) really fits in every way and of course the EEG confirmed it. Dr. Bell brought up LKS on the very first visit but Stryder’s EEG didn’t show the spikes and we went to the Mayo. It’s a miracle that all the events he has been through have kept this at bay to a point. Without the Keppra an without the intensive speech he went through as well as the continuing speech he has now, Stryder would not be talking now. The chain of events that have happened, happened for a reason.
Recently Stryder has forgotten simple things, words, he did not recognize them and it’s happened many times. He was calling his mattress “sheets” and then after correcting he still said bed stuff because that word just didn’t have a meaning. I have joined some support groups, but they are very few and not a lot of action, if any. I have emailed a couple moms who will be sharing their stories and I hope I can learn a little from them. There are differing stories, and different roads taken and because less than 300 people globally are diagnosed with this, the information varies and is slim.
I found this video of another young child going through LKS. It has some great points and I learned a few things.