Hi Karen Where is the epi at? Who is it? We are in PENNSYLVANIA? Our daughter in 11 going to be 12 on Nov 16. We are very frustrated right now too. Our Neuro...
Please, I need your experience. o any of your children have hard to control seizures as well as the eses or lks. My son has not gone more than 4 weeks with...
Hi, I'm sorry I can't really help, my son never had an outward seizure. But, I've heard good things about the keto diet. Or my son's ESES cleared up with...
We live in western PA and go to Cleveland Clinic. They have much experience with LKS there. Let me know if you need to know more. - Martha ... friendly ... it...
Wren - Hannah's seizure were controlled fairly easily it was the ESES that was rough for us. I really hope you can find some relief soon ! - Martha ... control...
Hello - my son will be 18 in March. He was diagnosed with LKS when he was 3. He'd had speech therapy from age 2-3 with no progress. Once on seizure meds...
As previously stated - my son's health status changed a few years ago just as we joined a new church. He was able to start their private (tiny) school and...
Hello all, Has anyone tried their child on steroids which initially worked, but then failed due to weaning too soon? Or has anyone's child regressed in...
I agree the seizures need to be documented. My son did a several day study in the hospital with a camera on him. They can match the brain activity with video...
I read an article somewhere a couple of weeks ago. It really intrigued me. It dealt with children with hearing loss/deafness. These children all signed. They...
Hello All, My daughter, Kaidyn, was diagnosed with Landau-Kleffner in January 2007. She was just about to turn four and was already non-verbal. It's been very...
Hi Beth, I'm Sam, mum, to Tai aged 8. Like your daughter, he was completely non-verbal and had no understanding of any language or sound. We communicated with...
Hello, Libby is four years old, and diagnosed three weeks ago. Would somebody with more experience tell us what kind behaviors their is experiencing. Thanks, ...
www.msgtruth.org/avoid.htm Look at the various links. Even though something doesn't specifically say MSG - ingredients can combine to form a potent MSG....
-Hi Sam- My name is megan and my daughter Libby was dx about 1mon ago she has been on steriods for about 3 weeks. I was wondering about how long did it take...
Hi Beth, I am Daunette, mom to a 9 year old with LKS. My son was diagnosed at 3 years old. He did not begin to communicate till he was 5 years old. He still...
Hi guys, I'm allergic to soy so I am constantly on the watch for MSG since a lot of it comes from soy sources. Most of this list is accurate regarding the...
Hi Megan, It took a few months to start to see any improvements in Tai's speech. 6 weeks after starting the Prednisolone treatment, Tai had an EEG which was...
My son has been on Prednisolone for almost a year....last time he was on it, they had him on it for 6 months...it has been 10 months this time. He occasionally...
Sam- I have ALOT of questions for you! My daughter is on Prednisone 7.5 ml and you had said that your son was on Prednisolone do you happen to know the...
My son does not have seizures that we are aware of at night. He only has outward seizures (or seizures during the day) he was having up to 60 or more a day. He...
Amanda- You said that your son was having 60 or more seizures a day, how do you deside what is a seizure? I'm having trouble defining a seizure. She has only...
He would be walking along and drop to the floor, or his head would bob and hit the table while eating, all the while his eyes would roll into the back of his...
Hi Megan, My son never had an outward seizure, but most LKS kids (around 80%) do. The seizures can all vary, from just staring, to what you described, it...
Sam The problem is, is that wehave taken her to the best childrens hosp in our area but none of the nueros have treated a cace of LKS. She has said up to 6...
Hi Megan, Whereabouts are you? Maybe someone on the board can tell you a good neuro who has seen LKS before. I think its so important that they have seen it to...
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...
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.
