4 June 2008

For the last five months Isla has been on an experimental drug regime of Cystagon and Mucomyst in an attempt to slow down the progress of her symptoms. The medications have to be taken every six hours and had unpleasant side effects including belly aches, nausea and so on. Tanya and I decided we would keep Isla on the trial until we had a clear indication that they weren’t working. Yesterday we visited Isla’s neurologist and the upshot was that we decided that the time has come to stop the trial. Isla has begun to have absence seizures which are brief, blank periods during which she is ‘absent’ for a few seconds at a time. These are coming perhaps four or five times a day. Isla is unaware of them herself but they are an indication that the medications are not working and that the disorder is progressing. Also, Isla’s eyes are very dilated, which indicates that her eyesight may be beginning to decline.

We will phase out the two trial medications and start Isla on some anti-seizure medication, which may also have the added effect of helping Isla sleep a bit better. Despite all this, Isla has been quite happy lately, loving her baths and scooting around in her modified walker. The reality is however that the form of Infantile Batten’s that Isla has seems to be very aggressive and things are declining more rapidly than we thought they would. Tanya and I are now focussed more than ever on Isla’s quality of life, making sure she that she has access to everything she could possibly need, doing anything that will make her as happy and comfortable as possible.


Luke and Tanya

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