Jessie - Hannah, we think started with LKS areound age 4. She was
not diagnosed unitl 7. At this time she was given steroids and she
improved dramatically. She has not had a major regression because of
the ESES. She had a huge set back in the fall when her lamictal was
too high and she started having myoclonics and complex partials but
now after changing meds she is doing very well again. She was only
on the pred for about 9 months. She is 10 and a half and I still
live in fear of a major regression or a new type of seizure starting
up. Every time I get a call from the school nurse my blood runs
cold and I hope it is about someone else's kid ( I teach at the
same school). At her last EEG in Jan the ESES was gone!!! Cross your
fingers, we are having another EEG in June and if it is still clear
the neuro wants to wean the Klonopin and Zonegran. Good Luck! -
Martha


--- In LandauKleffnerSyndrome@yahoogroups.com, "Sam"
<Sammycambridge@...> wrote:
>
> 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
>