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