Hildy, I have no knowledge of specific neurologists by name but have researched institutions that show greater research/knowledge in the area of LKS. Albert...
Kim and others, I called Thomas neurologist and he gave his blessing to increase Keppra to grand total of 2000 mg. Increasing by 500mg intially at night for...
Shayna, I'm afraid we don't have much info to go on to give informative reply. This is certainly an abnormal EEG and deserves further investigation by MD's and...
Our neurologist told us there is NO test for LKS.....yet a DAN! doctor I am considering taking my daughter to says there is? Can anyone shed some light on...
They can test to see if you have these brain antigens.. http://www.icdrc.org/documents/Anne%20Connolly%20article%201.pdf ________________________________ ...
go to www.qeeg.com info for you holly ... From: hildy gogal To: LandauKleffnerSyndrome@yahoogroups.com Sent: Wednesday, June 03, 2009 1:07 PM Subject:...
Hi Holly.  We are in NJ.....we did have a 72hr EEG & did have spikes. I am meeting with the neurlogist next week to discuss the EEG etc.  what ? should...
Hildy, The test for LKS is an overnight EEG. If there is spike and wave activity along with language loss/autistic behaviour, then any neuro who knows what...
Sam, Â Thank you for explaining this so clearly........sadly our EEG was done almost a year ago and the neuro at the time said the spikes were normal for...
what do you need to supplement with when using depakote? i forget what it depletes but i remember seeing something about folonic acid or carnitine on this...
carnitine need a script covered by insurance get blood test for it when you test the depakote level test is called L-Carnitine TOTAL AND FREE 2 test!! Holly ...
Hildy, Don't give up hope. By the time my son had his first EEG and was diagnosed, he had completely lost all language, receptive and expressive. We live in...
Hi Carla, Sorry to take awhile to respond to your question about whether anyone without continuous spike and wave patterns has gotten an LKS diagnosis. We...
Hi Kim, I'm interested in your pulsed steroid protocol. We have decided with our doctors to do a pulsed dose of oral prednisone weekly. Our doctor uses...
Hildy, I sense you are in that frantic stage trying to prepare yourself for Neuro visit to know all you can know and ask all you can ask at appt. Sam, Suzanne...
Actually mine sounds a little less complicated. Basically every Sat and Sunday morning for the last 11 weeks he takes a 10mg tablet of prednizone. He no...
Sharon, I tried posting this yesterday but it looks like it didn't come through. I want to thank you for your suggestion of night time valium for my son's...
Thanks for the details. Yes, that sounds as easy as can be! I don't know your child's weight, but I'm guessing this is less than the 10mg per kg of the Chez...
Suzanne, Thx SO much! Sometimes I feel like giving up b/c I start to feel like I'm crazy and I'm imagining all this or looking for things that aren't there....
Suzanne, You are welcome...glad I could make a suggestion that worked for him AND Neuro agreed with...amazing! Perhaps, it will work with my Neuro as well on...
Sharon,  Thank you for that wonderful list! My daughter has had a full genetic workup and we have r/o Rett's. A dx that we have been given by a previous...
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