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
>