Camrentalk

Camren was diagnosed with Landau Kleffner Syndrome last July. He lost all his language and most of his understanding. Here he is trying to say snack. You will also hear him say dada and please together but he can say both. Shoes, bye-bye and yep are also other words he can say. They still aren't clear but he tires. He tries to repeat us and is coming up with new words all the time. We are so proud of our brave little man

Category:

People & Blogs

Tags:

• Landau
• Kleffner
• Syndrome

[jjbouillon]

He was diagnosed after 2 EEG's.... the last being sleep deprived. His seizures were only happening while he was asleep. He does have a neurologist, a very good one in London at the children's hospital. He has since likely had 10 EEG's, an MRI, a SPECT scan as well as numerous visits to doctors/specialists. Were still working on the video.......

[jjbouillon]

He will be 5 in October. I am trying to post another video as he is talking and looks alot better.

[jjbouillon]

What is IVIG? I haven't heard of it. We were told my our neurologist that he is hopefull that he will recover. As we caught it a few months after he fist lost his speach he also has no brain damage from the seziures and has a "text book case" He never was unable to use his mouth to use a straw ect. Right now he understands alot of what is being said to him and names things without us asking. However we still have a long way to go as you know. I hope your boy is doing well.

[Hotforspeech]

How did it go for the diagnostic? Did he see a neurologist? Did they do an EEG?

Thank you for your reply. If you could post the other video, that would be awesome. We are students in Speech-Language pathology, we are in Canada.

[Hotforspeech]

How old is he?

[elisevankeulen]

I have a son with Landau-Kleffner Syndrome. We live in Holland and it's difficult here to find other parents with such a child. So I like it you made this video, so people can find out about it. I hope all parents of the world with LKS children can start a community or something like that, so we can inform each other on new treatments or insights.

[Batznblkcatz]

My son has this also, he is on the upswing now. I'm on youtube, IVIG's worked the best for my son. His mouth could work within 12 hours of a treatment, worked as in, could suck from a straw again and make sounds like B's, P's and other sounds that require lips to make. take care and good luck with all treatments. Love that boy, it gets better and sounds like maybe your child has a milder case, if he is already regaining speech. I hope that is the case

[seejay100]

I hope to shine some light in sharing that our daughter, Thalia, now nine, diagnosed with LKS after her second major regression at age seven and became functionally deaf & mute for over a year, has made amazing progress this past year, using sign language, picture-word cards home schooling, intensive speech therapy & therapeutic riding, Thalia's speech and comprehension is back to normal...98% of the time. We are well prepared with ASL & Proloquo2go on Ipod if she has another regression.

[jbouillon1]

Our mission since finding out Camren has LKS, was to share our story and to get people aware of this syndrome. It is one of the rarest forms of epilepsy and it effects children between 3 and 6 years. Thank you for watching. Even since this video, Camren has lost all the weight from the one medication, and is understanding and talking alot more.