Landau Kleffner Syndrome

[KellyD]

Hi everyone!

Long time no post lol :embarrassed:

I have met a lady on my epilepsy journey who has a 7 year old son with LKS. I have just read a post she has written on her facebook page explaining his condition which sounds awful :sad: She said that she has never met anyone with the same severity as his condition yet so I wondered if anyone on here might be able to put her in touch with someone with the same condition. All information and advice welcome!

 

[KarenB]

Landau Kleffner can be pretty devastating for children -- hitting around age 5 to 8. The seizures themselves are not so bad -- they are usually controlled with meds, and usually fizzle out during puberty.

The problem with LKS is the loss of language and also the behavior problems. The language issues do NOT usually resolve even with seizure control, and acquired aphasia can be permanent. It's such a rare diagnosis, that not much research has been done on effective measure, but aggressive speech therapy and steroid treatment seem to be the usual approach.

Jon's neurologist (and later his epileptologist) were sure he had Landau Kleffner, because he lost 90% of his spoken language in a 6 month period, beginning at age 5 1/2. He had a handful of tonic-clonics (about 4 or 5) during this period, but nothing too horrible. He also began exhibiting aggression, which we'd never seen before.

However, several sleep EEGs haven't shown the spikes that are characteristic of Landau Kleffner.

I haven't personally met anyone with a child with this condition. I wonder if there's an online support group?

 

[KellyD]

Thank you for your reply!

The lady I have met has a facebook page you can join, you just have to send a request. http://www.facebook.com/groups/EpilepsyLKS/