Sedona has been in the Hospital since Thursday. She went into statis seizures at school. She had 25 drops in 1.5 hours. They gave her 6mg of Ativan and still...
Gina - I am soooo sorry to hear of this!! Sedona was doing so well. Last fall Hannah had something similar happen. She was having those myoclonics almost...
I'm a careseeker and I have found the ideal match on http://sittercenter.bravehost.com/, It is a really trustworthy site.they identify your family's needs...
I have been on this site a few times w/ alot of feedback and some helps. So I am asking anyone who has used vitamins or any special diets to let me know what...
My daughter is 5 1/2 and was diagnosed with LKS one year ago. She has been improving, but we tested her for food allergies as I had always wondered if maybe...
Hi Everyone, My name is Stacey and we recently found out my son Zachary may have LKS. Zachary is 4.7 years old and was diagnosed with PDD-NOS at 21 months....
Stacey- my daughter is LKS variant, she had normal development until around 4, and then very slowly over the next 2 years lost speech. She has a very unusaul...
Hi Martha, When you say high dose of steroids how high are we talking? Also, how long before you started to see results? How long did your daughter stay on...
Jill, Why is surgery being considered if the EEG is normal? Surgery won't bring back language. As long as the EEG is normal then the language has every chance...
Hi Stacey, LKS is often mis-diagnosed as autism. My son never had an outward seizure, just the spike wave activity. Also his speech gradually fizzled out, this...
Thanks Sam and Martha for the responses.I really appreciate any advice and help. It's been a crazy ride for the last 3 years and I just want to help my son get...
Hi Stacey, You are right to be looking for a neuro with LKS experience, it is so important to have someone who knows what they are doing. If the spike wave...
Thanks Sam. I joined these two groups and posted on one. I am checking out the other info. now ... so ... spike ... no ... no ... more ... the ... for ... of...
Hi Sam, When you say it took many months for Tai's language to return... how many? What came back first? Did you notice he started understanding you or did he...
Jill - Hannah weighed 42 lbs when she started prednisone and her dose was 40 mg a day. I think it the dose is 2 mg/kg/day. We did that 20 mg at night 10 in...
Friendship Request Block myYearbook Email | Mark Spam sam has added you as a friend Is sam your friend? Please respond or sam will think you said no :( Click...
Hi, I believe that if the ESES is not stopped then there can be long term effect and damage. I actually read that in one of the scientific LKS papers by...
Hi, I believe that if the ESES is not stopped then there can be long term effect and damage. I actually read that in one of the scientific LKS papers by...
Hi there. My 7 year old son was diagnosed with LKS variant yesterday by a doc at the comprehensive epilepsy center at NYU. It has been a very long journey to...
Hi Jill, Sorry for the delay in replying. I've had to dig out my old diary! Tai started Prednisolone on May 1st 2004. After a couple of weeks, he was...
Hi Shayna, I'm Sam, mum to Tai who is now 8. I also suspected that my son had LKS after searching the net for answers. We live in England and ended up taking...
Shayna, "If I have to listen to one more person tell me that Sam needs more discipline, more structure more predictibility and all this will straighten out, I...
I am glad that someone appreciated and understood that comment. I swear, the next person, who in my mind should know better, who makes any sort of comment...
Hi, I must admit, even my own family sometimes struggled to realise that Tai's behaviour wasn't controllable by him. Anyway, its great that the seizures have...
Hey everybody!! It's been a couple since I last posted, so thought I'd give
y'all a quick update and maybe vent a little! LOL! So Porcelain is at her...
Hi Andrea, I just wanted to say Tai's progress was very slow, with a little burst here and there too. He too was on Hydrocortisone and Keppra and like you, we...
Sam, Thank you so much for taking the time to look in your diary and give me the play by play of Tai's recovery. It helps to have some real life information ...
hi everyone, ive posted a few times. My son has lks. The last 2 years have been horrid. At first it was extremly difficult to get a dx. At one point...
Hi Everyone, I am going to cross-post this so sorry for the duplicate. Here is my update on Zachary. We spoke with our Neuro, 2 DAN doctors and Stefanatos. ...
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