I have also posted this on 'Rare Epilepsy Groups'page, so please forgive me if I have caused your mail box to overflow! Hello Everyone, We received great news...
Hi Peta, Congratulations, that is fantastic news. We were in your exact position 2 years ago, and I posted all the same questions that you have! I admit I...
Hi Sm, Thanks so much for your response. Taylor has beeen on steriods for 8 months and the neuros are talking about weaning her off slowly over the space of a...
Hi. I was looking for information on LKS and came across this group. A little bit about how I got here...My son was a normally developing little boy until just...
Hi Kim, Welcome to the group. You say that your son had a sleep deprived EEG, was he actually asleep during the EEG? Kids with LKS will have an abnormal...
Thanks for the e-mail. He was asleep but they gave him something for it and he woke very quickly after 20 minutes so he definitely wasn't in a deep sleep. We...
Hi Kim, My son Tai was developing normally until about 18 months of age, when he developed some obsessive behaviour. We had just moved house and I was...
I want to thank everyone for all the great information. We just came back from Ft. Worth and my son's EEG was normal even overnight. So no LKS. Thanks...
Hi Kim, I'm pleased that your son hasn't got LKS, but did they give you any idea of what could be causing his loss of language? It sounds so much like LKS,...
At this point they are saying PDD with possible migrane headaches which are causing his "spells". I agree that it sounded so much like LKS. That is why I am...
Kim, I'm glad you are staying with the groups, please keep us updated on how things go. I hope you get a diagnosis soon for Vinnie. I know how hard it is when...
Is there a designated ribbon or anything that we can use for LKS Awareness? Missy- SAHM & Angel to Warrior Michael!! I am who I am because that's who I am, ...
I am looking for anyone that would like to share some info on Landau Kleffner. As far as child's behavior, types of seizures <if any> and anything else you...
Hello!! Let me know if I can help. My 8yr old son was diagnosed August 2005 with LKS. He is also on the autism spectrum and the behavior---OH MY!!! We have...
Hi, My 6 year old son Tai was diagnosed 3 years ago with LKS after losing all language, receptive and expressive. He never had an outward seizure though. His...
... seizure ... or ... Thank you for responding! Kerry has taken Lamictal, Depakote & Depakene, Carbitrol, Clonipin, Keppra, Topamax, along with a few others....
Hi, Tai also used sign language for a long time to communicate. But, as his language has slowly returned, we never or rarely use it anymore. Have any of these...
... Kerry is not on any med's right now. She has never had a clear EEG. I am looking for a new nuerologist now. I dont feel they are doing enough for her. Her...
Sedona is on a extremely low dose of valium for her seizures (6mg 2xd). She did terrible on the meds and great off them so we have decided to stop most of her...
Hi my son just turned three and five mos ago he had his first seizure. An EEG showed he has characteristics for LKS although his neurologist is hesitant to...
Hi Stacey, If his EEG shows the spike and wave pattern, then he has LKS. Some neuros will call it an LKS variant due to him being 2 when diagnosed. But...
Go see another Neuro. My daughter was dxed with LKS at 18 months and we took her to CHOP in Philidelphia. The dx is important to start working on improvements....
Sam- Thank you for responding so quickly. It is nice to hear from someone that not only knows what LKS is but has been through all of this. My sons name is...
Sam- sorry the last email was sent too soon, I pushed the wrong button. How long did it take to get your son diagnosed and how soon did you start to see the...
Hi Stacey! Just thought I'd jump in here too! :) Porcelain's 6 and was
diagnosed with LKS back in October. At the time she was still speaking in
sentences. She...
Hi Stacey, I know how heart-breaking it is to see your child going through this. Tai lost everything, he would scream and scream with frustration. He also had...
Hi all my name is Nickole and my 6 year old daughter has gotten a diagnosis of lks from her neurologist. He started her on ACTH and only kept her on it for...
Hi Nickole, If you read my message further down it explains all about my son Tai who is now 6. We were lucky that he was diagnosed quite quickly, but only...
Hi everyone, We are new to the LKS diagnosis, Kyra (my 6 yr old daughter) was dx last month. It appears that the former neuro missed it on her last EEG two...
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