Wednesday, November 10, 2004

It has been a long time between posts. Fortunately this has been because there has not been much to report. There have been a couple of minor wobbles, but overall Amelia is doing very well. She is now on 26mg Prednisolone every other day and there are no OMS signs most of the time. In fact the only sign that there is anything wrong is her incredible weight gain. She how weighs 31kg and she has very chubby cheeks.

She had a little relapse for a couple of days last weekend and we got lots of tantrums and a few other more subtle symptoms. We think she had a virus which must have stimulated her immune system and made the OMS flare up. Because of the relapse we are pausing tapering the Prednisolone for a couple of weeks.

The IVIG has been continuing every month at Westmead and has been going very smoothly.