Landau-Kleffner Syndrome Support Group

Hi everyone,

Been researching about Landau-Kleffner for a while now as I'd never really heard about it and knew that it was a rare 'disease'.

My 4 year old brother Hamish, has never really had a chance to speak. When he was 1, he started having seizures and it seemed to be triggered by pain. The first one was on boxing day 2007. He trapped his finger in the door and cried, and then he just stopped crying and it seemed like he was holding his breath. He then went limp and lifeless and we all thought he was dead, it was the most terrible thing I have ever experienced and wouldn't wish it upon anyone. He was taken straight to the hospital and they diagnosed him with Anoxic Seizures. He continued to have a couple of these breath holding episodes but eventually grew out of them by the time he had reached 2.

Hamish has always had difficulty speaking and he didn't progress as fast as the other kids in his nursery class did. Doctors thought he might have a learning disorder such as ADHD but we knew that it was something completely different. He's always been a bit clumsy but his speech has never really progressed. He can say some words such as Mum, Dad and Yes. Most of the time all we get is mumbling or he yells when we can't understand what he wants or means. He has no problem understanding what we say to him though, but he does have episodes where he will just sit there and stare in to blank space and not respond, and then five minutes later he'll be back with us and fine again.

He is such a lovely boy and is so clever. He has been going to a speech and language centre three days a week for a year now, and he also goes to an occupational therapist because he has trouble with his movement and balance. He was seen by a specialist who recommended that he was sent for an EEG overnight to measure any irregularities, this is when Landau-Kleffner was suggested. He hasn't been for this EEG yet and we're still waiting on a set date to get this done. They think that he suffers from nocturnal seizures because he is constantly being awoken by scary dreams and sometimes wets the bed.

If anyone could get back to us on this I'd love to hear other people's stories. Hamish is the perfect little brother and I wouldn't change him for the world. I just want someone to be able to help him with his speech to lift his frustration and exhaustion.

Rhiannon x

I'm sorry your brother is going through this. Your story sounds just like our son Camren. Our son has LKS he was diagnosed just before his 3rd birthday. He hit all his milestones but was behind in his speech. The blank looks sound like they could be seziures as that was the same thing our son did. Push for that overnight EEG, with our son most of the seziures were at night. We were told we were lucky to see them during the day. It's good that he understands most of what you say to him. Camren lost his understanding, and the ability to talk. He was also almost toliet trained and we had to start all over again with that. He is now talking to almost where he should be although it is still hard to understand some words. Speech therapy is helping with that. He also has an OT to help with fine motor, writing, scissors ect. I understand how frustrating it can be. May I suggest teaching him to use PECS or sign language. The PECS helped alot with Camren. They are pictures that he uses to tell us what he wanted. You can google them. Good Luck any more questions feel free to ask.

Jacki