-our health insurance is constantly sending us info to help treat Maggie's asthma. They haven't once sent us info on epilepsy.
-I read random blogs about families whose kids have heart conditions or leukemia or brain rumors or congenital defects. And so often, the family can handle the load til the seizures start ... Then they break a little.
-Even at work, the report of a seizure gets people fidgeting in their seats, more than a heart attack.
I think it's because you can't control it and as humans, we want control. We want that algorithm to follow that leads to results. We want to know what to expect, have warning signs, know how long it will last. We want absolute confidence it will stop.
With epilepsy, you don't get that. You don't get the guaranteed all clear. There aren't many meds to try, and the surgical fix requires removal of part of your brain!
L won't ever be in "remission" from seizures. She might get a reprieve, we might think we have them under control, but the next fever, the next growth spurt, even normal hormonal changes in a few years, can all set them off again.
Talk about a loose cannon.
Even Lainie has said, "When I have my next seizure..." Not if. When.
But maybe I should just take a lesson from Natalie. I was trying to find out where a certain stuffed toy came from and Nat said it was Lainie's, "You know, from when she got all shivery."
Shivery. Much nicer than seizures. And neither in our control.