Wednesday, July 28, 2004


Amelia had her first infusion of IVIG (Sandoglobulin) on Monday. We had been pushing our neurologist to get this for a few weeks now and so we were pleased to finally get it.

The infustion was uneventful. The worst moment was getting the canula put in and despite Amelia's tears of protest, thanks to the Emla patch she didn't feel a thing (we love Emla). After the last few needles when we used Emla patches, Amelia knows that she won't feel anything, but she still protests and has to be physically restrained.

The great news is that Amelia has been quite normal ever since the infusion (two days so far). Previously she was quite withdrawn and shy and as you would see from the previous posts, she had daily bouts of intense irritability. We think that the previous treatment, consisting of the tumour resection followed by 500mg/day IV Methyl Prednisolone for 5 days and then oral (40 mg/day) Prednisolone, fixed the ataxia and other movement problems, but it didn't seem to improve her behaviour much, so we are very excited to see the IVIG improving things further.

We are watching her like a hawk now, nervously expecting a tremor or tantrum, but so far so good.

We also saw a Speech Pathologist, Linda, on Monday morning. The consultation went well, especially since Amelia took a liking to Linda and was very cooperative. We haven't see the report yet, but the early signs are that she is doing the correct things for her age, but there are a few sounds that she is having problems with that don't normally trouble a girl of her age (4 years 9 months). We will be seeing Linda weekly now, so it will be very interesting to see if the articulation problems have gone away since the IVIG.

We now in the process of having our neurologist changed. Our current one says that he is too busy because he is trying to go part time from 5 days to 3 (and I think we have been difficult patients because we have been very demanding!), so he has referred us to someone else. Our new neurologist is the head of the pediatric neurology department in a different hospital (Westmead) and she has a 'special interest' in OMS, so we feel like we will still be in good hands, if not better, since even though our last neurologist made a fast and accurate diagnosis and had seen a few OMS patients, his 'special interest' is movement disorders rather than OMS.

Meanwhile we are slowly reintroducing Amelia to her preschool. Kara is going along with her and staying in class at the moment and we hope to phase that out over the next week or two (it depends on how irritable she is). She is still very shy, but we are hoping it is mainly because she hasn't been attending for a few months.


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