I am happy to report that the weekend was reasonably unevenful - in terms of seizure activity and so we have stayed with a low dosage of clanonzepam this is having it's desired effect I am happy to report this and have been hoping and praying that it would be only shortlived. The sleeping still continues to be cahllengin last night he was awake from 10:30 - 3:30am. I learned tonight of some slow release melatonin and so will have to follow this up. I have just learned of another family in Christchurch who has a boy who has angleman syndrome - this bring our merry band of angels to 6 confirmed. 3 families met late last month and had some time to share and our kids to meet - we will look to meet again in November.

Until next time peace be to you and yours - health to your enemies enemies.
D

The Melatoni seems to be working well - apart form the weekend when it seemed like it was only every other night that Elijah was sleeping through, he slept through Sunday, Monday night he woke, Slept Tuesday, Slept Wednesday.

On Monday we though we saw waht was an increase in drop seizure for Elijah, by Tuesday they wer more frequesnt and byt Tuesday afternoon were full on drop seizures, and so we talked with the Dr and she has suggested back onto a low dose of the clonazepam, not as much as we had before, but at least enough to get the seizures under control. We satrted on that yesterday and will continue and see how much difference it makes.

We are glad to have had the protective helmet made for him. We didn't have need to use it initially because it seemed like the drops were under control but now we are having Elijah wear it during his wake hours to protect his head. I took yesterday off work as a mental health day - the lack of sleep and onset of seizure needed some mental time out. Today is a planned day of leave and so will enjoy it. Elijah is not at preschool yesterday and today just until we see a change in the seizure behaviour.

Above is a pic of Elijah with his helmet on

By the grace of God go we - until next time