I'm brand new to the board and registered to let you know that I, too, have been where your daughter is now.
I was diagnosed with epilepsy at age 15 after having occasional myoclonic seizures (the twitches) for 2 years. I was definitively diagnosed further with Juvenile Myoclonic Epilepsy at age 23. I am now 31.
At first, I also thought the myoclonics were something that just happened when i was super tired or during menses. I actually thought it was something that happened to all women, and I just had to deal with it. I was diagnosed after I had a grand mal at school and ended up at the emergency room.
I kept on having myoclonic seizures all through high school because i was on the incorrect medication -- apparently, Dilantin does nothing for myoclonics (for me, anyway). I switched to a low dose of Depakote and that keeps the myoclonics seizures away.
I only have seizures, and myoclonics especially, when at least three of my triggers are all lined up. They are: menses, lack of sleep, lack of food, flickering lights, and stress. I can guarantee a seizure if all of them are present! My myoclonics start within 30 minutes of awakening, and sometimes generalize into a grand mal, so if I notice them when I'm in the shower, I get out right away and just crawl right back into bed and try to go to sleep.
My advice to your daughter (and this will be long, but this is the short version):
1. How do I say this, especially as a newbie here? So I'll just say it: You're still wonderful. You really are. After I was diagnosed at 15 I thought I was horribly broken. I thought no one would really love me. And trying to fit in? While twitching? It was completely beyond me how I would do it. But you know, my friends did love me, even while I was adjusting to lots of medication. I just had to take some time to love myself, too. And I had to be unafraid to tell people what's going on.
2. Don't push yourself. Landing unconscious on your head ain't pretty and it ain't fun. It's hard because the twitches don't affect your consciousness, well, not *really*, and so the first thought is to work through them. Uhhhh, no. They just get worse, in my years of experience. Just put the hairbrush down, because you'll just end up smacking yourself about
the head with it, really. (Yes, I have given myself a black eye recently with the cordless phone
3. Remember that you can still do plenty of stuff, even with JME. Actually, JME, once controlled, isn't that bad IMO. I usually know when I have to take it easy, and when I'll have extra energy. Just take your meds, and go about
your business. Make sure your best friend knows what's going on, and how to take care of you in an emergency.
My advice to you:
I second the advice to leave off the cotton wool (if that's, as we say here, to not treat her with kid gloves). Treat Kate like any other teenager, but with meds. The only imperative is that she rest when she feels "weird." Since the seizures are usually set off by lack of sleep and teens are always running deficient on sleep, you'll have to get used to her sleeping in excess of 12 hours a day. If she's at all like I was. But this is one thing I stress to new moms of kids with JME: make sure you talk about
the seizures a lot. What they feel like, how they're coping, and everything else along with it. It's easy to get to feeling totally out of control, but you can be a measure of sanity and safety.
Good luck, and remember -- it'll get easier.