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 with LKS when he was 3.
We live in England and took him to Paris to see a specialist for his
diagnosis.
I believe that most people on the board are from the U.S.
There are a few of us in the UK, and Peta from Australia.
In my (and many others) experience, steroids have been a life-saver,
quite literally. Tai had lost everything. But now, he goes to a
mainstream school, he has regained his language and is just a normal
boy. His language is not quite age-appropriate, but he can read and
write and learn. He has help in school with an aide, and he is doing
great.
I don't think its ever too late to start treatment, what have you
tried? The aim is to clear the EEG(s). It took a few years for Tai to
get better, after his EEG normalised. I believe his brain had to
recover and heal after all the activity, but he's getting there.
Tell us some more about your boys, how they are doing, what are their
difficulties, what treatments you have tried etc.
Best wishes
Sam