Landau Kleffner Syndrome - Epilepsy Message Board

sjs40 · 10-26-2003, 09:12 AM

This is a rare seizural disorder that only affects ones speech. Only children 4-7 yrs old have been diagnosed as having this and they seem, for the most part to grow out of it some time in adolesence.

My son was diagnosed when he was 5. One day he just could not get his words out. He has petit mal seizures (no convulsions) all the time without medication. The dr said its like when an adult cannot speak after having a stroke.

As far as I'm aware there have only been around 250 cases of this worldwide in the past 50 years.

Is there anyone familiar with this disorder?

(I also posted this on the Rare Disorders Board which doesn't seem to get as much traffic as this one)

Thanks.

robinrobin · 10-26-2003, 09:14 AM

no i am not, but i hope u find out something ((()))

LisaGuthrie · 10-27-2003, 11:46 AM

Hi SJS40,

I don't have personal knowlege of LKS, but, I do know what it is. I have a 22 mth old whos been seizing for a year now. At first it didn't effect his language. But, in April he started seizing several times per day and he lost all his words. He doesn't even say Momma and Dadee anymore. And no one can tell us why...

I've deleted my web site links on this. If memory serves me the UK tended to have more info on this disorder then any of the US websites I found.

Good luck to you in your search. God bless all our children.

...and you are more then welcome here! There are so many people who have been great about provide insite on what my lil man goes through.

Love and light,

Lisa and kids

sjs40 · 10-27-2003, 12:00 PM

Thank U for your posting.

My son actually just turned 9 and has been on Depakote and just weaned of of Prednisone which is a steroid. With his med he does talk pretty well.

Your little guy is very young, but maybe there is med for him too.

God Bless!

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HSMomof4 · 11-19-2003, 10:28 PM

My son has LKS and has had it for many years. He was misdiagnosed for several years because he started having the seizures (undiagnosed) at such a young age that his brain pushed the ability to speak to the right side (it should be on the left).

He had brain surgery 3 years ago for it. It needs to be AGRESSIVELY treated as soon as it is diagnosed. If you peds neuro isn't familiar with it FIND SOMEONE WHO IS! Sorry for the caps, but my kid is permanently brain damaged because of the idiots he was seeing for seven years.

Took the new neuro 15 minutes to diagnose what the other guy couldn't for years.

Nancy