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