Thank you! It's really encouraging to hear about Tai. My head is up again and I'm trying to stay positive and focused. It's easy to get down when you have some...
Beth, Tai was diagnosed when he was 3. We had already put his name down for the local school when he got ill. We got lots of help and advice from his nursery...
Hi Beth, I'm at work, so will be quick - I'll try to pop in later for a more comprehensive run down of our situation. I am Peta, my daughter is 5 and also has...
To those of you that have taught your children sign language, how do you go about teaching her it when I cant get her to focus on anything!?! Alls she does is...
Megan, I have the same issues with my son and sign language. We use a little binder full of pictures and he uses those to communicate. I keep signing and...
Jill She is on topamax, prednisone, and zantac. I think that I "maybe" have conquered the topamax (fingers crossed!!) Its a pill and I just put it in my hand...
Catherine...IÂ SO haven't been avoiding you. I have gotten your messages and your calls, just seems like I can never answer the phone when you call. Thank you...
We had the same problems with prednisone. It's so bitter, I had trouble hiding it in anything. We tried pills and liquid. I had some success with crushed...
Hello all Merry Christmas and Happy Healthy New Year wishes to all!! By chance has anyone tried high dose of valium protocal? Verses the Steriods We are...
We never tried high dose valium but our neuro said that it is not a long lasting treatment. Usually the ESES returns after treatment. The steroid treatment has...
Hi Holly, we did do the high dose Valium and it worked for about 2 months. Zander's EEG cleared up for a short time, some language came back and within two...
my son as well.. Its like he is trying to remember how to put the sentence in order. So I guess he doesn't stutter the actual word, but he does "stutter" the...
She was diagnosed with LKS almost 9 years ago. If anyone has questions about progression of this disorder from my experiences, please let me know. I am only...
Absolutely - please share your experience. Each child is different and what helps with one may not with another. Maybe your experience will be a blessing to...
Hello. This is all new to me and we are still in a diagnois stage. On December 19,2008 My healthy above average son changed completely. A child how has been...
My daughter has a varient of LKS. She is not a case book child and she had a cortisol test and was seizure free for 10 days. She has never been seizure free....
Hi there all this is pretty overwhelming we were just diagnosed a couple of days ago. We have been through a tons of tests MRI EEG and blood work and then sent...
... have just been diagnosed and are going thru the stages of medication and praying it works for him, he is 4 1/2 and still has his speech it is just a bit...
where in Pa are you?? We live in western PA. I highly reccommend Dr. Gupta at cleveland clinic. He saved my daughter. We were going to Children's of Pittsburgh...
We live in Central Pennsylvania, Williamsport. Whereis Cleveland Clinic? ... Dr. ... for ... developmentally ... recovery ... and ... stage. On ... completely....
Hello, My son was diagnosed at 3 years old after losing all language. I wonder why you don't agree with the diagnosis? It sounds just like LKS to me. I totally...
Hi Jenifer, My son had success with steroid treatment (Hydrocortisone). The side effects weren't great, but by this time he had no language whatsoever, it was...
Wow - Williamsport is a long way from here. You are about 4 hrs away from me (stoneboro, Pa, which is halfway between Erie and Pittsburgh) I think, and then...
Hi there I would love to hear your story about how your daughter is doing now. there is not alot of info out there about the progression of the syndrome,...
This mess just gets more frustrating. I didn't hav much faith in medicine and I have lost that. Geisinger who gave us the diagnois of Landaukleffner is now...
OMG! If it is helping then DO NOT take him off. Insist that he stays on for a longer period. Why are they questioning the diagnosis? Did his EEG show the spike...
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