HI EVERYONE.I NEED TO KNOW IF ANYONE HAS USED A DIFFERENT TREATMENT FOR LKS. OTHER THAN HYDROCORTIZONE AND IF IT WORKED FOR HIM OR NOT. DOES ANYONE KNOW...
Here is the link to the booklet: http://www.friendsoflks.com/LKSInfo.pdf Also here is a link to another LKS board, where there is currently a discussion on...
Abeer, I'm interested to know a bit more about your Ospolot experience. How long was your son on it, what sort of deterioration did you see, and how soon did...
We have tried multiple epilepsy meds (lamictal, klonopin, keppra, topamax, and zarontin). Right now, she is on keppra & zarontin -- zarontin was the only one,...
Lamictal was the worst here too (major regression).... and zarontin the best. A close second to the lamictal was the klonopin -- we took her off it after less...
befor ospolot my son used to speak but with a heavy tongue. the dr.olivier dulac decieded to try ospolot because no other med. were working. the dose of my son...
Hi, I just found this forum and am hoping for some parent perspectives. I'm wondering if she might have an atypical form of this but she's very mild. If you...
summer hi. especial wave spike hast o be present on the eeg to diagnose lks.plz go for a long sleep eeg as soon as possible. however i learnt from my...
Hi Summer, I think you are definitely on the right track in wanting to schedule a 24 hr EEG..thats really the only way to find out whether there is an LKS...
Sorry, Abeer! Just going through all my email after a hospital visit this morning. I'm working now and don't get to check emails every day... Megan> Date:...
Abeer, thanks for your reply. That does sound awful, to have such a big regression after only 2 weeks, particularly the increased seizures - after a similar...
Thanks for your response Rosa. Yes, I completely agree that having regressions should be exaimined no matter if the skills are regained. t certainly sets her...
Thanks for your response Abeer. We are on the west coast in the states so it's not likely we'll get to Boston. It's a little funny that I'm actually hoping it...
summer i still hope she is not lks. or any other thing. maybe her brain is maturing and as a result some functions are bieng confused. well if finally your...
exept for the ones who already contacted me pleeze i need to know others experience if they have tried oliviers protocol. my son is been on hydrocortizone now...
Abeer, I think you will find that there aren't many children that have used Olivier's protocol. Most neuros use Prednisolone, not Hydrocortisone. As I said,...
sam thank you so much/ may i ask you to pray for my son/ i am very depressed and afraid my son will not get the speach back.the ospolot that olivier gave us...
Hello, I have been on here before, but have been kind of out of the loop lately. My son had been doing well for 5 weeks, no seizures at all. Then out of the...
Hi Abeer, I truly know what you are going through. My son had no speech or understanding for a very long time, it was devastating. We also wasted many months...
It does, doesn't it? He is 6 years old and weighs 54 pounds. He was diagnosed with LKS about a year ago, but has been having seizures for 2 years now and...
olivier will see the eeg today.my son was 32 k.g.when we started the treatment.he started at 15 tablets each day that is 5m.g. to each kilo. then we reduced...
Amanda, I think for sure that is way too much medication...How are you going to know what is causing what, whats working? whats making things worse? some...
Yes, I am the Laura from VT.... it really does sound like your son is on a lot of meds (esp. benzo's) -- but I'm not a neurologist -- and I'm going to assume...
I feel the same way about not knowing what is working and what is not. And, I also agree that the doctors often tend to push the drugs and use the kids as...
We went to Boston Childrens...and saw Dr. Bourgious (sp. sounds like boozhaw) He wasn't very personable, but did recommend the Topamax. Our old neuro in...
amanda plz tell me the full name of the neuro. from new york who was in discover magazine the one that has written an article about l.k.s.. i do have a...
Having problems with message search?
Fill out this form to ensure your group is one of the first to be migrated to the new message search system.
