EEG News...

We have had a difficult past month. Dray has been completely slipping down hill again from responding well to the valium. Although the effect of the valium only lasted about a week or so, it was nice to see him doing well again for that short time. Dray's side effects from the valium and keppra have been difficult. He is so jittery, can't get to sleep at night, and is just generally unable to calm down for most of the day. It is exhausting to watch him. I talked to his doctor (Joel Thompson) about switching his meds... and he wanted to see Dray's EEG that was coming up before doing so. He had his EEG on August 24th. He was such a sweetie about getting his "hat" put on. Usually he just cries and is in a panic over all of the glue and suctions being put on his head. But, now he is completely okay with it all. He sat so still like a pro and played with some toys.

Dr. Thompson called me on the 28th and said that his EEG had looked just like his first and it was time to go to steroids. So, it's disheartening, even though I basically knew what the result would be. I hate to see him on steroids. The doctor is going to have him taking them everyday (35 mg) and if he responds well we can put him on the "pulse" method of taking steroids. The "pulse" method is taking them just over the weekend on high doses. Until we can do that he needs to stay away from school because of how steroids suppresses the immune system. So, now I need to get the school district to send some in-home services to help Dray. I just hope that won't be an issue.

Dray has been doing well and working hard at his speech therapy. Every time he goes his attention span gets longer with the activities. Sign language is also coming along for him. Last night we had a pretty good conversation in sign language. Dray told me about driving a blue car with dad, and we teased back and forth about the color because it's really a black car. But, he signed most of the words and it was fun to see him communicate clearly that way and understand my signing when I asked him some questions. His neuropsychologist gave us an idea for doing picture boards with him. Which is EXACTLY what he

needs to be able to understand his schedule and surroundings... just making sense of what is happening around him. I am very excited to show him that, and I'm grateful for all the good advice we get from people around us. So nice to have such good and capable people looking after Dray and helping him.

Tomorrow he starts the steroids. We pray that his body will be able to respond quickly and that he will be able to make progress, go to school, and communicate better with us. Thanks to everyone who continues to offer help, love, and prayers for us and Dray.

Getting Started...

I started this blog for my son, Dray, after getting the diagnosis that he has Landau-Kleffner Syndrome. I'm hoping this will be therapeutic for me... because this is a difficult and serious diagnosis to cope with. But, also I would love the opportunity of having someone else to learn from and be able to read about their experiences, so who knows if this blog might be helpful for someone... some day. I hope that some family will one day benefit from our experiences with Dray. He is a sweet and loving little guy. I always thought of him as a smart, engaging little boy that related so well with others because of his smile and his sweet nature. This syndrome has taken much of that away, and we hope that we can get all of him back to us some day.
We are getting started with everything! Dealing with his diagnosis and his regressions, finding new resources to help us (which is a joke), this blog, and medications to help Dray. As of July 31 he has been on valium every night (8mg). Which I saw some good things starting to happen after a few days on it. But, then a slip back to some old problems: talking jibberish, unresponsiveness, and more anxiety than usual. So, after trying for several days, and having both his doctors out of town, we finally got a doctor to put him on keppra. As of August 14 (Saturday) we haven't seen any progress in him. One noticeable difference is that he seems to be bouncing off the walls and very floppy (that's the only word I can think of to describe him). We will give it until August 24th when he has his next EEG over night and then we will re-evaluate his medication.

We had a bad night with him last night. We tried to play "direction games" with him. He was so very unresponsive and frustrated with instructions. He couldn't understand "under" and he couldn't understand the concept of picking 2 puzzle pieces, rather than just one, when we asked. Things he would have known before his regression this summer. It ended in my tears because we feel like he refuses to respond to any of our help. He gets too overwhelmed and frustrated. We get to the point where we sit and wonder if we just have to watch him disintegrate right in front of our eyes and we can't stop it. Right when I get so discouraged I realize I have to be stronger than that and have more hope for him. That, for sure, is much more difficult than it sounds!!