Hello.
My son, Will, was diagnosed with Autism in April. I still do
research and read books. I cam across LKS. I am just wondering if
Will could have that instead? How do I find out for sure? Most
doctors are so clueless about Autism and LKS. So I rely on other
parents for advice!
Thanks,
Beneal
--- In LandauKleffnerSyndrome@yahoogroups.com, "Sam"
<Sammycambridge@...> wrote:
>
> Hi Peta,
> I'm Sam and I live in England. My 6 year old son Tai has LKS. Tai
was
> diagnosed in April 2004, he was also 3 and a half. By the time he
was
> diagnosed, he had lost ALL language, receptive and expressive. He
> couldn't even recognise common sounds like the telephone ringing
or a
> dog barking.
> As you know, the most important thing is to clear the EEG.
> Unfortunately, different things work for different children. I can
> only tell you what worked for Tai.
> He started off on Prednisolone which cleared his EEG very quickly,
> but when we started to wean the dose down the activity returned,
even
> after returning to the original dose. Tai had actually been
diagnosed
> in France, where we had taken him in desperation to see a
specialist.
> I contacted the doctor who diagnosed him, Professor Dulac, and he
> suggested Tai changed from Prednisolone to another steroid
> Hydrocortisone. Within 6 weeks of changing, Tai's EEG was clear
> again. This was in January 2005.
> Tai attends a school near where we live which has a deaf unit.
When
> he started school last September, he relied totally on sign
language.
> Now, he is in a normal class although his language isn't age-
> appropriate, he can talk in sentences and understand what is being
> said to him. He has come so far in the last year. I would say his
> language is around the 3-4 year mark, which is incredible. He
> continues to improve all the time, and I am very hopeful for his
> future. This time last year was a different story.
> You are doing the right thing by trying to get as much information
as
> you can to help your daughter. You will find you will have to push
> and be firm with the doctors. Most of the parents on these boards
> know more than the doctors treating their kids!
> If you want any more information on Hydrocortisone, please feel
free
> to ask. Tai is also on Keppra, we are not sure if this is helping
or
> not.
> I think most parents will also tell you, that at some point their
> children's behaviour has suffered terribly. Tai's has always been
> bad, steroids or not!
> I see that you have checked out the other sites listed below, I
> believe there is an Australian support group too, I don't know if
you
> have found that?
> Can I ask for how long your daughter has been without language?
Did
> she ever have age-appropriate speech?
> Know that you are not alone, it is such a shock when your child is
> diagnosed with this rare disorder, but with the right treatment,
> there is a good chance of recovery.
> Take care
> Sam
>