Holy powerful nose spray, Batman!

...This stuff really works! That's the good news. Bad news is, we had to use the new seizure rescue med for the second time last night. Praise God we haven't used it more than that. We've had this new stuff for a few months now, and it works almost immediately to stop the seizure. The rectal stuff we used for years never really did anything, which is how we kept having 20-80 minute seizures.... I wonder how much time and brain health lost could have been saved if we'd made the switch sooner.

Melanie started coming down with James voice-stealing chest cold Saturday afternoon. I was encouraged to see that she started an illness, even had a low fever, without a seizure. Usually the seizure comes first, out of the blue. But since she had symptoms first, we knew to keep our ears and eyes open and to start the antipyretics right away. Still got hot and seized around 10 last night, thankfully before we were asleep in bed. Not much noise to warn us... I REALLY need to work on getting our insurance to cover a pulse oximeter to put on her during the night to operate as a seizure monitor.

She's doing ok today, all things considered. She's full of gunk and without much of a voice, but she's in ok spirits. This sickness lasted a whole week for James, but I'm hoping Melanie might be spared such a long period of suffering. And of course praying she doesn't seize again. Though the rescue med works so quickly, she does suffer a long and miserable post-ictal period, when her faculties don't really work, she's uncomfortable- shivery and feverish, eyes are completely absent and she can't talk or swallow for a while. And today her motor skills are sub par. But I'm always thankful when she wakes up after a seizure and still has her speech and other skills. So many Dravet kids have lost so much to "that one seizure." Praise God she has always bounced back! And today she said the most amazingly clear 7-word sentence when she sweetly said, "Please James, I want to sit down." Sometimes she comes out even better on the other side, like the seizure hit the 'reset' button.