Friday, November 6, 2015
No Relief all Week
Mira has had a rough seizure week. She is consistently having 1-2 involved tonic-clonics a day, typically in the morning and late afternoon. This is on top of her steady stream of myoclonics that she has every day. She has been getting zero relief and still unable to play with her toy for any significant amount of time. She had one good stretch earlier this week for almost an hour, but every other time, she just has continuous myoclonics from it and we have to quickly take it away. We are continuing with the Vimpat wean, which has been a little rocky so far. Wednesday she had an awful day at school, with her teacher reporting she was very irritable all day. Earlier that morning, she had an enormous seizure, a long day at school, then had another intense seizure before dinner. As I've said before, it feels as though if she isn't having a seizure, she is recovering from one. Mira is also becoming so much less active at home. She doesn't seem to enjoy racing around the house at all and hasn't vocalized in weeks. She has become much more passive too, not really mustering the energy to do much of anything. Today she seemed very tired, slouching in her chair after dinner, just wanting to go to bed early - she just looks exhausted.