Hello everyone, I am surfing the internet looking for support groups and info on LKS. My daughter is 3 1/2 and was diagnosed with LKS in May 2006. Her ...
Hi Peta, I'm Sam and I live in England. My 6 year old son Tai has LKS. Tai was diagnosed in April 2004, he was also 3 and a half. By the time he was diagnosed,...
Hi Sam. Thanks so much for replying to my post. I am also a member of the LKS Australia yahoo group -however it is not a very 'active' group. Taylor was...
Hi Peta, First of all, thank goodness you have a paed who is so on the ball. Most children take years to be correctly diagnosed. You have that in your favour,...
Hi Sam, Wow, I had no idea that the steriods were a 'longer term thing'. I was originally told 6 - 8 weeks! I find that the doctors here, although wonderful,...
Hi Peta, Thanks for your call recently - please try again, anytime from Mon 25th onwards; am home during the day this week. Am keen to find out more details...
Hey Lee, Yep - will call when I have a quiet moment. Chat to you soon. Peta ... From: LandauKleffnerSyndrome@yahoogroups.com on behalf of Lee Sent: Sun...
Jennifer- My daughter was dxed at 18 months. At 15 months she had a 10 word vocab but talked like a deaf child. At 18 months she lost everything, language,...
Hi Peta, Yes, a lot of neuros prefer the short term treatment, the only problem is if the activity returns afterwards. Sometimes it can't be controlled twice...
Hi all.... I have written before, and I apologize for always asking so many questions and the same questions to boot!! I just never feel like I have all the...
Hi all, Just wondering if any of your children have been prescibed this drug? Did it assist with behaviour management and sleep problems? What were the side...
Hi Peta, CJ has recently been prescribed this for head banging behaviour when he becomes frustrated. He takes 0.25ml (tiny dose) at night. He was originally...
I don't see how 24 hours could be overkill. I haven't kept up with the posts too well here, but yours stuck out. I know my sister at one point had a 3-day...
I agree. A one hour is not enough time. Especially on the chance that your child doesn't fall asleep or is only on the verge of sleep. We had to go through our...
Hello. My son, Will, was diagnosed with Autism in April. I still do research and read books. I cam across LKS. I am just wondering if Will could have that...
Hi Beneal, The first step in getting an LKS diagnosis is to get a sleep EEG done, preferably overnight. This will show up the spike and wave pattern that LKS...
Hi everyone! Hope y'all had a good Thanksgiving! :) I was just wondering what kinda of experiences you've had with Lamictal? My LKS dd is currently on...
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...
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