Hi Sam.

Thanks so much for replying to my post. I am also a member of the LKS Australia
yahoo group -however it is not a very 'active' group. Taylor was developing as
expected in all areas. She had age appropriate language until she was
approximately 2 1/2. She could ask for milk? Ask where Daddy had gone, say all
family members name etc etc. When she was approx' 2 and 9 months, I noticed her
language skills regressing. She was no longer using sentences, then her
articulation was effected. She would mispronounce words, struggle to get them
out. At first everybody told me that this was behavioural - her way of dealing
with her little brother being born - attention seeking behaviour, but I knew
something was not right. It was recommended to us that we start speech therapy.
Her speech therapist (very young and inexperieced) announced to me after two
sessions that she thought Taylor was Autistic. Mind you, Taylor does not display
any autistic tendencies or behaviours - the only common denominator was the
speech regression. This suggestion sent me flying off to a Paed' who noticed in
his office that Taylor was having absent seizures. EEG followed. Then ambulatory
EEG. Then the diagnosis. That was May. Since then her receptive and expressive
language have all but disappeared. She has retained two words, 'No' and "wee
wee". She has also gone through periods of neurological deafness. Most days
she doesn;t even respond to her own name.

Since then, Taylor has been taking Epilim, Lamictal and Prednisolone.
Unfortunately her EEG continues to worsen. She has been on Prednisolone for 4
months! Sadly - no postive results. Her behaviour, at times, is intollerable -
particluarly after a dose of steriods.
We are currently experimenting with reducing the Prednisolone dose to see if
this assists with her behavioural problems. I think we are finding this so
difficult because before the meds, Taylor was an angel. She was very mild
mannered, settled, slept well, highly sensitive to disapproval etc. I really
feel like somebody took my daughter 4 months ago and gave me another child!

She has recently begun attending a deaf school - their early education program.
She is in the bilingual class and is learning to sign very quickly. She loves
it. She can finally communicate with some kids her own age and this has helped
to reduce some of the communication issues between us also.

Sorry to go on and on. I feel like I am writing the sequel to WAR and PEACE! I
guess it is just reassuring to find somebody who understands our woes. I hate
what the medication is doing to her but feel that we have no other choice. I
guess I would feel more positive, if we were seeing a positive result from all
the meds - but we are not.

Who knows what tomorrow will bring - I try to hang on to some hope.

Peta - Australia. (Looking forward to summer!)


-----Original Message-----
From: LandauKleffnerSyndrome@yahoogroups.com on behalf of Sam
Sent: Fri 22/09/2006 7:43 PM
To: LandauKleffnerSyndrome@yahoogroups.com
Subject: [LandauKleffnerSyndrome] Re: New member - Australia

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






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