Landau-Kleffner Syndrome Support Group

Hello all! I am new to this site but have a daughter with LKS. She was diagnosed in 2003 at the age of 1 1/2. She just had her 9th birthday. It has been an extremely long and emotional journey through this fog called "LKS". We have been on prednisone, carbamanzipine, depakote, dilantin, lamictal and the newest is vimpat.

Katie had a grandmal seizure in Jan of 2003 and we did not notice anything at that time. She then over the next couple of months have two smaller seizures, after the third she lost her speech completely. She is now 9 years old and we have started to see some improvements in speech over the last couple of years. After several EEG's it has been determined that most of her seizure activity happens while she sleeps and we have not actually witnessed a seizure in a couple of years.

She does speech therapy as well as therapeutic horseback riding, which she absolutely love!

It is great to have another place where I can talk with folks who understand what I am going through, because we are all in the same boat.

I look forward to talking with all of you!

Thanks, Kim

Hi Kim

My son Joshua is nearly 9 and he has LKS also. He was diagnosed 3 1/2 years ago and it has been a very long and sometimes sad journey.

It's so hard for other people to understand what it is like to live with a child with LKS because they don't see half of what we deal with day in and day out.

Because it is such a rare condition people have never heard of it and they just don't understand how hard life is for Josh.

I find it is so draining dealing with the emotions and his behaviour. Even his 2 older brothers don't understand him and this makes me and him very frustrated. Please know that I'm always here to listen and do understand what your going through.

Maria.