Hi Jill,

I'm Sam, mum to Tai,7.

Unfortunately, I am unable to help with neuros in the States as I
live in England. Unless you fancy a trip to France! We saw a
wonderful specialist in Paris called Olivier Dulac, who gave me my
son back!

You are right to seek out a specialist (and there are a few), because
this illness requires aggressive treatment. The spike wave activity
will cause further regression, and will take longer to recover from
the longer its left.
I don't want to worry you, but just give you the facts!

We took the steroid route as a first choice. We had completely 'lost'
Tai, he had lost all language, receptive and expressive. Its taken
time but Tai has regained his language and my son is back.

Speech therapy is a must too. The thing that helped the most with Tai
at the beginning was sign language. Tai goes to a mainstream school
with a deaf unit, so learned BSL (Britsh Sign Language) at school. I
went to college once a week to keep up with him, and it was great
fun. Also, it help Tai beyond belief, helped with the frustration,
his and mine!

Tell us a bit more about your son, how old is he, when did he first
show symptoms, has he lost all language etc.

Best wishes

Sam

--- In LandauKleffnerSyndrome@yahoogroups.com, "benbsmom"
<brighams@...> wrote:
>
> Hi all,
>
> My name is Jill and my son Will was recently diagnosed with LKS.
He
> has been on Depakote for 5 days now, but so far I haven't seen any
> changes in his ability to communicate. Those of you who have had
> success with Depakote I would be curious to know when you started
to
> see an effect. I miss my little boy so much and I want him back. I
> would appreciate any information any of you can provide about
> treatments that have worked for you children. We've talked about
> steroids, but I want to give the Depakote a chance first. I'm just
> not sure how long to wait. I worry that the longer the seizures go
> uncontrolled the more he will regress. Also, is there anyway to
seek
> out professionals that are more familiar with the disorder? It's
so
> rare I'm not sure that there is such a person. I feel like I'm
with
> a capable neurologist, but he has seen one case in his years of
> practice and that was 8 years ago! I've also started the ball
> rolling with getting him into speech therapy. I'd appreciate any
> input on that as well. I guess I'm just looking for some help and
> support from those of you that have experience and understand what
> I'm going through.
>
> Thank you,
> Jill
>