Hi Jessie,

Thanks for your reply. After Taylor's initial diagnosis - we went through the
worst 12 months possible. Taylor was having more than 100 seizures each day.
She lost all receptive and expressive language. She could barely walk. Her
hand-eye coordination was so badly effected that she couldn't feed herself, she
was incontinent......it was Hell. When the neuros suggested the steroid
treatment, I was very resistant. They carefully explained the side effects to
me. I researched and spoke to as many people as I could, I was still a little
reluctant, until taylor had a 15 min tonic-clonic seizure that resulted in
'status'. At this time the neuros also told us that Taylor's EEGs was one of the
worst they had seen (but as we live in Australia, with a smallish population and
only a handful of known cases of this illness - I guess it's not that hard!)

We went ahead with the treatment. She initially started on very high doses, and
the side effects are awful (mostly managable, but awful all the same) then when
things started to improve, she was slowly weaned back to a moderate pulse dose -
which she has been on for the past 12 months.

In that time - we have gotten our little girl back. The turn around has been
quite remarkable. No seizures, she walks, dances, rides a bike. Her hand-eye
coordination is fantastic. Her language recovery has been painstakingly slow -
but improving rapidly at present. Her receptive language is much better - she
can now understand a large number of single words and 2-3 word sentences. Her
expressive language is still limited, but we also believe that she is dyspraxic
and this is impeding her progress in this area. She mostly uses sign language to
communicate. Her receptive and expressive use of sign is pretty amazing. She
has been attending a school for the deaf for 18 months and has a signed vocab
of...well, we have lost count but generally what she can't say, she can sign!

I guess, given how well she has done on the steroids, I am somewhat reluctant to
wean. But we always new that this was not a long term solution. My greatest
concern is that we will see a big regression in language and motor skills - and
a return of seizure activity (esp. the dreaded CSWS). We know this is a
possibility, I guess we willjust have to keep our fingers crossed.

Kind Regards,

Peta



-----Original Message-----
From: LandauKleffnerSyndrome@yahoogroups.com on behalf of Jessie Wendt
Sent: Thu 24/04/2008 2:46 AM
To: LandauKleffnerSyndrome@yahoogroups.com
Subject: [LandauKleffnerSyndrome] Re: weaning steroids

Hello Peta~

I personally haven't ever used steroids on my son. My doctors
haven't even said that was an option. Has the doctors expressed any
possible side effects that could happen?

It took 8 yrs to get my son diagnosised, so I have alot of damaged
that may never be fixed. My son's EEG is one of the worst that the
doctors have ever seen. I still have great hopes that we will
continue to improve, but it all takes trying new things and alot of
patience. I think any parent that has a child with LKS has got to
have a lot of patience and understanding for these awesome children.

My best advice would be to do what you think is best for your child.
I personally don't do anything that has major side effects, just
because that is a lot of lost time of learning.

Is your child in any type of school such as Early Childhood Special
Education or preschool?

Hang in there and go with your gut feeling :-)






--- In LandauKleffnerSyndrome@yahoogroups.com, "bptl4"
<murray.peta.e@...> wrote:
>
> Hello All,
>
> Just looking for some feedback from those that have been through
the
> process of weaning steroids.
>
> Taylor has been on Prednisolone, Frisium and Epilim for almost two
> years. She has been on a moderate, pulsed dose for 12 months. Her
EEG
> has been clear for 18 months.
>
> At our last visit - the neurologist has suggested we attempt to
wean
> Taylor off of her steroids. She wants to do this slowly over six
months.
> I have very mixed emotions about weaning her. I know that the
steroids
> were never meant to be a long term treatment and I hate the awful
side
> effects that they cause. But I am scared that we will see a return
in
> seizure activity.
>
> Taylor has been doing so well on Prednisolone. She hasn't had a
> seizure in 18 months. Her recpetive language is improving in leaps
and
> bounds. Her expressive language is improving, but still vastly
behind
> her peers.
>
> I would like to hear of other people's experiences with weaning
> steroids after a period of 'positive results' (a clear EEG). How
long
> did it take to wean your child off? Were there any set backs along
the
> way. Did their EEG remain clear? Has their language continued to
> improve, plateau or regress? Did you have any issues with adrenal
> crisis?
>
> I would like to hear the good, bad and the ugly. I would rather be
> informed and prepared - so, hit me with it......what was your
> experience.
>
> P.S: the neuro has some concerns as Taylor is still so young. Less
> than 3yrs (age of onset) - she is now 5yrs, 3 months - far from the
> teenage years where this hideous illness tends to burn itself out.
>
> Much appreciated,
>
> Peta
>




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