So we have weaned Edda off of Trileptal because we think that the Trileptal is responsible for lowering her platelet counts – I suspect that it is not that straightforward and that the platelet count will eventually be found to have no good reason to be the way that it is – but I’m thankful we have an excuse to take her off at least one anti-convulsant. As it turns out, (surprise. surprise.) the seizures have not returned and Edda’s energy level has increased noticeably. No more reports of sleeping at school. A lot more whacking and flailing of the arms (which can be both a little dangerous and painful as one has to have the skill of a ninja to deflect the oncoming windmilling arms). A lot more teeth grinding (especially when falling asleep) and a lot more chewing of cloth (as seen in the above photo).
It was no surprise to me that the seizures did not come back. It has been Edda’s habit to cycle in and out of seizure “eras”. Lasting from 6-12 months, she would have seizures and then they would go away. It will also not surprise me that the seizures will come back. But I will take it as it is now, no seizures and a higher energy Edda.
This is going to be a very big year in terms of outlay of capital for modifying the house. We are going to *finally* get the stair lift installed in the next few months as well as eliminating the two steps off our front porch to our driveway.