Quickest Ever

Melanie's infrequent seizures have followed a couple of patterns for at least a year: Either we hear and find her face-down in bed, full-blown tonic-clonic (grand mal), or if she's awake it would start slowly with the eyes and then generalize at some point. Well, Dravet doesn't like you to get too comfortable with any kind of pattern for too long.
Last night, as I was preparing dinner, Melanie was passing back and forth through the kitchen shaking maracas. Grandma Johnson and I were right near her, smiling at her as she passed through. Suddenly she fell back into a full tonic-clonic, thankfully with a bag of clothing right behind her and not a door frame. Nick laid her down, while I got the midazolam sprayed up her nose within a minute. The convulsions stopped within a minute, and she fought off the remnants of the seizure for a few more minutes.
Dad sat with her in front of a football game for over half an hour, while she rested. Within 10 minutes she was opening her eyes a bit, and within 20 minutes she was exclaiming at the game, "oh no! Woah!" She needed help with dinner, but boy oh boy, I've never seen her recover so fast! Today she was not showing significant lapses in motor, and her speech was just a bit sub par. Her nose is getting congested and she's cranky and edgy, so I'm thankful it was not a "random" seizure. Haven't had one without illness since February 2011. I'm still nervous that it may be the stomach bug I came down with Thursday night, but so far we're just seeing stuffiness. I'll take a head cold over a stomach thing any day! For myself of course, but especially for my little girl who needs to keep her meds in her body and who has never thrown up before...
It's like night and day, comparing this new rescue med to the worthless diastat we were using for years! No doubt, if we were still using that stuff, it would have lasted at least 20 minutes, we may have ended up in the ER, and she would be unable to even walk today.

Make November purple

October was breast cancer awareness month, and everything turned pink. Did you know that, on average, more people die in the US each year from epilepsy than from breast cancer? I've never been a really big "awareness" kind of person, but when you see your child and consequently your entire family suffer from such a terrible and unpredictable disease, it's hard not to be changed by that. I am saddened and angered by the lack of awareness of seizures and seizure disorders, but even more so by the lack of research and funding. There is so much more to be understood, and our loved ones need better treatment. It's out there, ready to be found, researched and utilized. We need to start with that ambiguous idea of "awareness," with all its oppressive email forwards, Facebook posts, colored apparel and accessories, bumper stickers, petitions, news articles, brochures, walk/runs... and for us, personal stories. And when enough of the public make enough noise -and raise many funds in the process- then we can start getting a lot more accomplished. For us, of course, we care most about Dravet syndrome, and that is why you will find me bugging you, at least twice each year, to donate to the fundraisers in which we participate for the Dravet Syndrome Foundation.
Segue...
You have one more day to shop Maddie's Mall at www.maddietischer.net. And while you're thinking of her, praise God for Maddie's birth five years ago on November 3rd. Though her light was stifled far too soon, her legacy is already beautiful and prosperous.

Remember to wear your purple-- put a button or ribbon on your coat, wear your dravetfoundation.org purple silicone bracelet... tell people about it. I told our service man and then our waitress today. Caught them off guard, but that's ok. :-) I'll be searching for good factoids, buttons, etc. and share them as I find them.

Start with this:  http://cureepilepsy.org/aboutepilepsy/facts.asp  about epilepsy in general. And of course the two Dravet sites at the top of this blog are amazing resources.