Thursday, August 05, 2004


The last week was a rollercoaster ride for the OMS. The first three days after the IVIG were amazing. Amelia was totally back to normal. No irritability, tantrums or slow speech and she was a happy, normal four year old! We had forgotten what she was like because she hadn't been like that for about 8 months, she was singing and dancing around the house and interacting with people gregariously. Unfortunately, this only lasted 3 days. On Friday she reverted back to her irritable, withdrawn state. This may have been due to reducing her prednisolone from 40 to 35mg/day on Thursday. We had forgotten what a happy child Amelia used to be and having her back for only 3 days just reminded us how much we have all lost to OMS.

The last couple of days have been relatively good though, and we are hoping that things are settling down after the 5mg/day prednisolone dosage change. Today was probably the best day she has had other than the few days after the IVIG.

Today we went to Westmead hospital and saw our new neurologist, Dr. Jayne Antony. We were extremely impressed with her and are very happy to be seeing her (in a strange coincidence, we established that her father was born in the city where Dr. Pranzatelli works). She presented us with a treatment plan which involves IVIG every month for the next six months with very gradual reductions in the steroids. This is the treatment we have wanted for a while, so we feel a big sense of relief that we don't have to chase after it anymore.

We got the speech pathologist's report this week and the summary was:

Milly presents with ataxic dysarthria that is interfering with her speech intelligibility. Reports suggest that she has made significant gains since her treatment has commenced, but the situation is not yet stable. Her language skills were assessed as being average for her age and do not appear to have been affected by her condition.

So the good news is that her language skills have not been affected.

Meanwhile Amelia is slowly getting back to preschool. Kara left her there for over an hour today and it went very well. Unless she has another relapse, we think she will be back into a normal Montessori preschool routine in a week or two. Wow.

Check out the new Wikipedia page for OMS that we have written. Please change and update it as required!


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