Hi Peta,
I know exactly how you feel. Tai came off the steroids last August
after nearly 3 years on them. As you say, its not a long term
treatment, and the time has to come one day when you start the wean.
Tai's EEG cleared in Jan 2005, so it was normal for 2 and a half
years by the time he came off them. Our neuro in Paris told us that
to reduce the chance of a relapse, then the treatment must be for at
least a year. By the time Taylor comes off them it will be 2 years.
Its a nerve-wracking time, and I even cut the supposed last dose in
half again to stretch it out for another week or so!
What I will say is to check each dose reduction with an EEG. We had
an EEG every 4 weeks just to check it was safe to drop down to the
next dose. Tai has continued to improve throughout, because his EEG
has remained clear. I think this is the key. There is no reason why
Taylor won't continue to make gains, as long as the reduction is very
slow, and the EEG is regularly checked.
When Tai was diagnosed, he started on the pred, and after a few
months we started to wean. The activity came back, but we didn't know
at what stage because there were no regular EEGs. After upping the
dose, the EEG was still abnormal, so this is when we switched to
Hydrocortisone.
It's such a worrying time, but I think it has to be done sooner or
later.
By the way, Tai was around 3 at age on onset (probably earlier). I
think that the most important thing is length of treatment not what
age the child is.
Good luck Peta, let us know how she gets on
Sam