Hi! Im Sam and I have a 6 year old daughter with LKS She had no speech until about a year ago and now doesnt stop talking! I think it varies but Lititia is ...
Hi Sue, I am Daunette, and I have a 7 year old boy with LKS. He was diagnosed at at 3. Learning is a struggle for him too but he has learned to read almost...
Hi Sam, He did have a negative BEAM EEG at 6 years old. It seems like there are some experts out there that I may not know about. So you know of any good...
Hi, What is a negative BEAM EEG? Sorry, not familiar with that! Tai just has the ambulatory EEGs, he takes home a little back pack, and we return the next day...
Hi Sue, I am also Sam, mum to Tai age 7. As the other Sam said, this illness varies greatly from child to child. I assume that your daughter has had an EEG...
Hi Sam, My son did have a clear EEG at around 6 years old. This was done by the BEAM test. It is done by superimposing the 2 hour EEG upon an MRI of the...
Hi Sam Thanks for the email info.; So here is the 411 on Anna. Yes she has the spike pattern in her slow wave sleep cycle as documented by a video EEG during...
Hi Sue, Some doctors do chose the pulse dose method. I know that it can be extremely effective in some children, without the usual side effects of steroids....
Sam THANK YOu so much for helping me through this.. so let me clarify Anna takes 5 ten milligram tablets of prednison each day for 5 days (wed - sunday) then...
HI Sue, My daughter was diagnosed with LKS at 3. When first diagnosed she still had an expressive vocab of 200 or more words - was making short sentences,...
Sue - I feel your pain about not meeting IEP goals!! I am a teacher in the same district that my LKS child is in. It is tough! This is our districts first year...
HI all, I think others may be experiencing the stress that comes from the behaviors we see with our seizure prone children. I found some skills that work...
Kelomom- Cleveland Clinic just opened a new monitoring unit that has either 6 or 8 beds. It is really nice, we were lucky enough(not!!) to be there when they...
We started taking our son to a neurologist at Clevland Clinic in July this year and have had good success with them. The neurologist we see is Dr. Ingrid...
Hi My DD took 50mg of prednisone for 5 days last week and is starting the pulse piece this weekend. Early in the week went well but as the week went on I saw...
Just a quick reply now - I'll come back and write more when I have more time. It took 3 - 4 months of high dose steroid treatment before we saw any improvement...
I have noticed that since Sedona got her period and started to go through puberty at age 10 she has had a change in seizures. Before she had 300+ daily...
Gina - Hannah turned 10 in July. She has not started her period but she started having myoclonics and complex partials the first week in October. This is no...
Martha~ I believe that this has something to do with puberty. Sedona has had these drops since June and in Aug she got her period. Now it is every 2 months....
Gina - Hannah started On Oct 4,(yes I will remember the day forever) with eye rolling and head rolling while running around the house. It went on all day and...
I'm really just thinking aloud - but would appreciate any options/thoughts... A bit of background, my daughter was diagnosed with LKS at 3. She lost all...
I think that you should put her in the 2nd class. My daughter was dxed at 3 and is now 10. We had her in a ton of classes but the smaller ones focusing on...
My daughter was dx with LKS just last week, she is 6. So, I clearly don't have much info.... 1st, congrats on the clear EEG!!! That is fantastic. Our current...
Hi Peta, This really is a difficult one. Are the 2 classes at different schools? We were in a similar situation, although slightly different. We had the choice...
Thanks everyone! Sam - Both classes are at the same school. I attended an information evening last night and feel much better about things. Taylor will be on...
Peta, It's great that the classes are in the same school. As you said it would be best if she could start off in the right class, but it seems like they are on...
Hi Sam, I was hoping to ask a somewhat personal question. How does Tai perform academically? We are still 'in the dark' regarding Taylor's cognitive...
Can write her name by herself!!!she can also copy most letters!! She was really angry with me as i have kept her off of school with a bug this week but shes...
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