Monday, June 28, 2004

Back home

This evening saw some new and strange behaviour in Amelia. Her speech started to slow down again, and by about six o'clock it was as slow as I have ever heard it. At about this time Amelia started to insist that I write something down, but she couldn't remember what she wanted me to write. It seemed that she had lost her short term memory, and she was thinking faster than her mouth could keep up so she wanted me to write down her thoughts for her. Eventually, after about an hour, she dictated the following sentences to me and insisted that I read them every morning:

I don't want to talk because I don't remember the things I want to say to Daddy

I can't remember those things that I want to say

Despite saying that she didn't want to talk, she kept on talking, just very slowly. I think that this disturbing development is just a combination of over tiredness and the different steroid dosage. We are due to see the our doctor on Monday week, so we will just watch and wait until then. If Amelia is not almost back to normal, we will start the next treatment which is IVIG (gamma-globulin).

I think Amelia is becoming very aware of her condition now and she is starting to get very frustrated with the OMS symptoms, such as the slow speach. I think this awareness might be turning what used to be tantrums into frustration.


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