Dray's EEG was this last Friday on October 15th. He got hooked up, and now that I'm not so clueless (thanks to Dr. Chez), I can now tell what's kind of going on. Let me be clear that I'm no EEG expert at all. I just can tell what Dray's EEG should and should not look like. Anyway, I was so excited because it looked so good. When he fell asleep it looked perfect. Believe me I sat there just staring at it and waiting for the screen to show the seizure spikes. I think I saw maybe one page with a bit of spikage (yes, I know that's not a word). So, the EEG was completely and dramatically different from the EEG in California. Yay!! I mailed the EEG to Dr. Chez immediately. I was just informed a minute ago that my assessment was right on.
The bad news is that the steroids have really messed Dray up this time. He is ravenously hungry. His eating consumes his day. He just is searching, talking, thinking, and devouring food from the moment he wakes up until he goes to bed. But, it's not just that he's hungry all the time... no, no he has VERY specific menus made up in his head. If you cannot deliver on that menu it is just crushing to him. He'll decide it's a pizza or hot dog or whatever, and if you don't have that he is in a "roid rage". He gets so angry. It might not bother me so much except for the fact that it seems like he has no desire to do any activities besides eating. I take that back, when he's not eating he wants to lay on the couch like a beached whale because his stomach ALWAYS hurts. His stomach is so tremendous right now. I was patting it and said to him, "look at this tummy," to which he replied, "yeah... I'm fat". He said it like it was no big deal, but that he is aware of his largeness. He told me that for exercise he wants to ride bikes with dad, unfortunately Todd is in the Middle East right now. So, no exercising for that chubby little guy. He does give a great big bear hug these days. Love it! Anyway, Dr. Chez wanted to start tapering a little. So, we'll start tapering down a bit. Hopefully that will relieve him a little of some of these nasty side effects. I love steroids and I hate them. I have difficult feelings to reconcile with on this medication.
We go to California again on Tuesday. Hopefully this time we will not be staying at the Sutter Hospital Hotel, but at an actual real hotel. I will let you everyone know the full plan from there. Once you stop the seizures.... how do you keep them from coming back? That is the million dollar question. We shall see how Dr. Chez responds to the question next time on "Living with Landau Kleffner Syndrome". I will update then. Thanks to my family, and you know who you are, they help us endlessly. How blessed we are to have you!
