Hi Sam,

Wow, I had no idea that the steriods were a 'longer term thing'. I was originally told 6 - 8 weeks! I find that the doctors here, although wonderful, are floundering a little. I was told that they only treat 1 - 2 new cases every 3 - 4 years. So there is not alot of precedence to go by. Some neurologists can work their entire lives without treating a case of LKS in Australia.

Taylor started on Epilim for 1 month, then she was admitted for a 3 day course of IV corticosteriods, which have been backed up by the oral course of Prednisolone for the past 4 months. Lamictal was introduced 2 months ago.

After visiting a behavioural paed last week - to see what we could do about Taylor's behaviour, he suggested that we put her on Respiradone. But after consulting with the neurologists, they have all decided that this is not the best option - instead they have asked us to reduce her steriod dose for a week (half it) and see if that makes a difference. We may also consider giving it to her every second day, instead of two large doses each week - to see if that makes a difference. She is currently on 1mg/kg/day - so obviously not a high as some children have and when we half it - she will be on 0.5mg/kg/day. How do parents cope with their children's behaviour when they are on higher doses??? Or is Taylor unlucky in that she appears to be so sensitive to the side effects?? Taylor is gaining weight - but still within acceptible limits.

We are off to have another ambo EEG in two weeks, and see the neuros a week after that. Fingers crossed for an 'improved EEG'!!!!!

Cheers,

Peta

-----Original Message-----
From: LandauKleffnerSyndrome@yahoogroups.com on behalf of Sam
Sent: Sat 23/09/2006 11:05 PM
To: LandauKleffnerSyndrome@yahoogroups.com
Subject: [LandauKleffnerSyndrome] Re: New member - Australia

Hi Peta,
First of all, thank goodness you have a paed who is so on the ball.
Most children take years to be correctly diagnosed. You have that in
your favour, but you do have to work very quickly from here. What
level of prednisolone is she on? Some children see results at
2mg/kg/day, some it needs to be 3mg/kg/day. Also, for alot of
children, this treatment only works once. If you did get success with
it, you would have to stick at it for at least a year. Many doctors
try to wean the children too quickly because of the side effects, the
abnormalities return, and then can't be controlled again.

What dose of pred is Taylor on? Did they start her off on all 3 meds
together or add different ones in at different times?

I know what you mean when you say that the behaviour is intollerable.
But, it must be so much worse when you aren't seeing positive
results. When Tai was on the highest dose of hydrocortisone, he
nearly doubled his body weight, stopped growing, developed body hair,
a hump on his back and lots of other terrible side effects. But,
because his EEG was improving we stuck at it. It was a very tough
time. I'm so glad to say it was the best thing we could have done for
him. Family members questioned what we were doing, because there were
no clinical improvements for months, he couldn't speak or understand,
even though his EEG had cleared. We knew that given time, when his
brain had started to heal, we would see results. It was a long slow
process, but he is getting there.

Please don't feel like you are going on, this is such a rare illness,
there aren't many people out there who you can talk to about this.

Hope to hear from you soon

Sam

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