Our three yr old daughter was dianosed three weeks ago with LKS. She has had an EEG and MRI.The doctor explained to us that she shows seizure activity.He...
Hello Michael and Tracey, I'm so sorry to hear of your daughters diagnosis. Our daughter,four, was also diagnosed with LKS when she was three. It is a...
Hello Michael and Tracy! I think one of the things LKS teaches you is you definitely take it one day at a time! My daughter Porcelain is 6 and was just...
Hi Michael and Tracey, My 6 year old son Tai was also diagnosed with LKS at the age of 3. He never had an outward seizure, and was developing 'normally'. He ...
Thank you so much for the valuable information. We see the doctor the 4th.I will ask him if he has treated LKS before.Also when taking steriods what is some of...
Hi again, When Tai was at his worst, he had no language at all, he was deaf and mute. I got a large white board and put some velcro stickers on it. Then, I...
Hey everyone! Just got back from the neuros a while ago. Porcelain's got a clear EEG!! :) Of course we didn't get her to fall asleep, but it wasn't picking...
Hi Andrea, That is fantastic news! Will she have another EEG in 4 weeks, as its still important to make sure the sleep EEG is clear. Keep us informed. Sam...
hi sam how long was tai on the steroids for. My daughter was on a low dose of acth for 6 weeks she started getting some language back but after it was stopped...
Hi Nikole, Tai is still on a very tiny dose of Hydrocortisone. We are in the process of weaning, so he should be off by July. This is the most common problem I...
... LKS ... I was wondering if anyone knows of any adults with LKS? My daughter is 23 and was diagnosed with LKS at age 3 1/2. Just looking for a support...
Hi Susan, To be honest, when Tai was diagnosed, that wasn't even discussed. We only actually met him the one time, the rest of the time we have communicated by...
Hi Sam, I just typed a long email but it seems I lost it. You may be getting two but here we go again. My daughter is doing very well now considering the...
Noreen, thank you so much for sharing your story..You have given me great hope for Zanders future...He had the MST surgery a year and a half ago and (knock on...
Hi Noreen, Thanks so much for your story. As Rosa says it gives us hope for the future. It is great that Katie has a job and can drive. I do worry about the...
How amazing that your daughter is doing so well Noreen...it gives me much hope for my munchkin. My daughter Shardaye had the MST surgery at Rush as well, when...
... socially, about 2 1/2 to 3 years old..he still uses sign lanugage to help fill in the gaps.<<<<<<<<<< Rosa, (and anyone else who cares to comment) can you...
Hi- It almost sounds like you are in some what of a similar situation that I am in with my son. He is 3 yrs old and at 2 1/2 had a convulsive seizure and his...
Hi Sue, The symptoms of LKS began when Zander was about 2 1/2 maybe closer to 3...It almost feels as if that is where he is starting from socially and...
We too took Tai to be assessed because of some odd and obsessive behaviours. At that time, I think autism was also on the table but it was ruled out. At the...
So does this mean that there is more of the brain affected than just the speech region, or is the lack of speech causing the social delays/abnormalities? Do...
Hi Susan, For my daughter a BIG part of her problem, socially, is just the fact that she KNOWS she's different. Before she had LKS she was more than happy to...
Zander had so much seizure activity(spikes) that it took the doctors a very long time to figure out if where the focal point was...in fact we didn't know if...
Landau-Kleffner syndrome with mitochondrial respiratory chain-complex I deficiency. Kang HC, Kim HD, Lee YM, Han SH. Department of Pediatrics and Epilepsy...
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