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