Sunday, September 19, 2004

IVIG at Westmead

Amelia had her third infustion of IVIG (Sandoglobulin) on Thursday 8th September. This was her first treatment at Westmead and it went very well. It seems that things are done quite differently at Westmead to what we have experienced at Randwich, and it was a welcome change. Everything went to plan, so we got in at a reasonable hour and got home before bedtime too.

The treatment did not seem to have much of an effect on Amelia. In the week before, she had been very well and had almost no tantrums or 'OMS'ish behaviour, but in the week after she had quite a bad run. We think that the week was bad because she had two very short nights sleep and we also reduced the prednisone from 32.5mg to 30mg on Sunday 12th. Because the IVIG did not seem to have an effect, we are hoping that the OMS has gone into remission and the behavioural issues we see now are due to the prednisone. Most of Amelia's tantrums and outbursts are triggered by lack of food (or just the thought of it!) and they are made worse by lack of sleep, but every now and again she gets irritable for no apparent reason, so we are still not sure what is going on.

The prednisone is certainly having a big impact on Amelia's body. She weighs about 26.5 kg now and she has a typically round, cherub like Cushingoid face. We looked at some photos of her from a year ago when she was underweight (at about 17kg) and we nearly didn't recognise her. Apart from the weight gain, there are various other steriod side effects that could be happening in Amelia's body, so we are very keen to ween her as soon as we can.

Amelia's social behaviour has been improving a lot over the last few weeks. She is generally much less withdrawn and she is continuing to attend preschool normally. Her teacher, Chandini, reported to us yesterday that Amelia is quite normal in class now. She is doing her 'work' well and moving from task to task normally. Amelia is telling us more about the other kids in class too, and we think this is because she is having more to do with them. We had some friends over a week ago and Amelia really enjoyed their company. One or two weeks earlier she would have hid away in her room.


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