My daughter Sarah was diagnosed with LKS in Oct 07 and was started on Depakote. She then started Prednisone in Jan 08 and is being weened off. Her EEG still...
Sedona had this issue as well when she was on depakote. She was toxic and we didn't know it. Come to find out that she is sensitive to meds and that a little...
Hi Everyone, I was just wondering if any of your LKS children have ever used RF units (hearing aids) to assist with their receptive language? RF units help to...
Hi Peta, its funny you should mention that..At the last IEP meeting last month, FM units were brought up...we are going to try this out for the new school...
Thanks for your response. Sarah will be hospitalized in another 2 weeks to have a 48hr video EEG done, so I will add this issue to my list of concerns. Take...
Hannah had severe tremors on depakote also. So much that we took her off of it as a result. They went away when she went off. Then she was on lamictal and also...
These are her symptoms and because she is so complicated I am sending feelers to all of you. No Fever No eating No Drinking No change in meds No energy No...
this would scare the tar out of me. not so much the no energy, but the no peeing or drinking. so many seizure drugs are harmful on the liver and she needs to...
Hello to all: I just found this group and I'm really hoping to get some great information from all of you that are dealing with the same illness. I noticed my...
Hello All, Just looking for some feedback from those that have been through the process of weaning steroids. Taylor has been on Prednisolone, Frisium and...
Hello Peta~ I personally haven't ever used steroids on my son. My doctors haven't even said that was an option. Has the doctors expressed any possible side...
Hi Peta, I know exactly how you feel. Tai came off the steroids last August after nearly 3 years on them. As you say, its not a long term treatment, and the...
Hi Jessie, Thanks for your reply. After Taylor's initial diagnosis - we went through the worst 12 months possible. Taylor was having more than 100 seizures...
Hi Jessie, I'm sorry to hear about your 2 boys, what are the chances of that? Do they both have the LKS diagnosis? I'm Sam, my 7 year old son Tai was diagnosed...
Jessie - Hannah, we think started with LKS areound age 4. She was not diagnosed unitl 7. At this time she was given steroids and she improved dramatically. She...
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...
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