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!!
I came across your blog while searching for information on LKS. I can relate to your travel being re-routed. My son has had seizures for 3 years. His speech has recently regressed. His neurologist said it may be LKS but the eeg was inconclusive. He wants us to get a 2nd opinion. Can you provide more information on how Dray was diagnosed, etc.? My email is kristi_gee@merck.com. Thank you.
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