Saturday, January 14, 2006

Weaned off Prednisone

Well, it has been a long time between posts.

Not a great deal has changed since last post. Amelia's condition has been relatively stable, but we are still struggling with sleep and behavioural issues.

The big news is that Amelia has just been weaned off the prednisone. She has not had any for a few days now. We have been weaning for a few months now and her behaviour has been a bit unstable throughout the process, but it did not change significantly as the dose got lower. We had worried that we would hit a dosage limit where the OMS symptoms would come back strongly, but it didn't happen. Huge relief.

Most of the time she is a normal girl, but there are still a few 'OMS' moments. In particular she usually has trouble going to sleep and every now and again she gets the 'black cloud' over her and she is terribly irritable for a few hours. She is a very anxious child, but we don't know if that is steroidal, OMS or just her nature.

After reading the latest Pranzatelli research, We are trying to get some trazadone to help the sleep problems, but it is not generally available in Australia, so we are fighting a bit of a battle to get it. It is tempting to just buy it over the internet, but for now we are relying on our neurologist to get a special order through the hospital pharmacy. I wish we had trazadone two years ago!

Our plan now is to wait for Amelia to stabilise and then work on reducing the IVIG.


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