We've not used depakote yet, but we are doing a keppra/zarontin combo. We've seen cognitive improvement & the side effects were temporary. Laura Laura Ryan 53...
we're doing a keppra (1000 mg day) and lamictal (50 mg day) combination. We've seen a huge improvement, the side effects were minimal. My only problem is she...
Angie - How far are you from Cleveland Clinic?? That is the hospital we go to and have had good luck there. We live in Western PA. My daughter was on pred for...
Thats incredible, I hope she continues improving. Good luck, and Happy Birthday Kyra! I hope and pray that it gives my son some kind of improvement. Beverly,...
Well, the good news is that since she had the one dose of ACTH on Jan 26 she has not had more than 6-7 drop seizures. It has now been 8 days and yesterday we...
Well, the good news is that since she had the one dose of ACTH on Jan 26 she has not had more than 6-7 drop seizures. It has now been 8 days and yesterday we...
Gina, Thats great! Has Sedona never tried steroids? I know you have said before but I forget. Is it to do with her other conditions? The ACTH is obviously...
ok, someone help me with my lack o knowledge. what is an acth? you ppl use all these terms...yes i know what an eeg and an mri are. i dont know what a veeg is...
Sounds like you have most of it... VEEG is just a videotaped EEG - usually done over several days in the hospital. Your son has actually had much more...
ok, yeah my son has had two years of veeg's then. about 9 of them but his were 24 to 48 hours, depending on how bad or good he was doing. thats when he would...
My daughter Sedona is starting Steroids today and I was wondering if anyone else has done low dosing? She has been started at 20mg. I think that this is alot...
Hi Gina, My daughter started on 75mg daily of Prednisolone (the equivalent of 4mg/per kilo/per day) - this was slowly reduced to 50 mg after 1 month, next...
Peta Sedona is on Prednisone pills. 20mg every other day. We wanted her on ACTH because it worked for us in the Hospital and the dose was only .25 mg. It...
Hi Gina and Peta, I agree with Peta Gina, it is probably best to start with a higher dose which can then be gradually reduced. Most kids won't get a second...
Gina, forgot to say, I think I read on one of the other boards that after starting steroids, their child had trouble sleeping/waking early. It was quite...
Hannah started at 2mg/kg of prednisone and then we taped down over the next 9 months. Hannah did not sleep well at first. Maybe for the first few weeks. Also,...
Hi Gina Yep sleeplessness and early waking is definitely a side effect of steriods. Taylor went from sleepig 12 hours a night to not sleeping for more than 2...
My name is Amanda, and my sons name is Dalton. He is 6 years old and has Autism and Landau Kleffner Syndrome. I have been searching for a group like this, it...
I just can't get over the fact that there are so many of us out there...I feel such relief!!! Are any of your children or were they at one time really out of...
Do any of your kids seizure at night or during the day? Dalton seems to seizure early morning and throughout the day, at times he has up to 60 a day. Amanda...
Hi Amanda, Welcome! My name is Sam, my son Tai is 7 and was diagnosed with LKS at 3 and a half. He has only ever been treated with steroids and a small amount...
Hello! :) Your son (I'm assuming is the picture on the home page) is SO handsome!!! Tai losing all language before diagnosis sounds so similar to Dalton. We...
Hi Amanda! Glad you found the group! It's so easy to feel alone with an LKS dx. I had no idea that epilepsy could do this before my daughter was dx. My dd's...
Have any of you had an IV port put in for IV steroids or ACTH?? I am thinking that this may be the way to go. Gina ... Looking for last minute shopping deals?...
Hello Laura!!! It IS easy to feel alone, isn't it???? What a scary and overwhelming "syndrome" this LKS has turned out to be. Dalton had a double surgery on...
Hi Amanda, My son was also given a poor prognosis; he lost his language gradually over many months, he was very young when the activity started and we believe...
Hello Sam! :) I have researched that too on the LKS and Autism, and we often wonder....both ways, whether he does or doesn't...it is all SO confusing. I have...
Hi Amanda, It really does!! I remember my parents mentioning to me about Tai's speech regressing, but I told them that it may not be progressing much, but it...
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