Our daughter had her first seizure the summer of 2009. She stopped breathing and her heart raced out of control. There are times, even years later, that I stand in her room reliving that night, imagining all the what ifs in painful detail. What if the ambulance hadn’t made it in time? What if, what if, what if…
After starting meds, the seizures continued, but lessened in severity. Each occurred during sleep. The neurologist believed the transition from one level of sleep into another was some sort of trigger.
Then Avery had her first seizure while she was awake. It lasted a few minutes and stopped abruptly, leaving her left side limp, temporarily paralyzed. We thought she had possibly had a stroke.
We later learned she had experienced Todd’s Paralysis — a focal weakness in part of the body, occurring after about 13% of seizures.
It’s amazing how easy it is to mask your panic when you have another child to consider.
Our son witnessed the seisure. “Oh no, oh no, oh no.” he repeated.
“She’s fine,” we told him in an absurdly casual tone. “We’re going to take her to the doctor just to be safe. There’s nothing to worry about. You get to go to Grandie and Granddad’s house. They’ll probably let you watch a movie!”
With that, he was assured and even excited about his slumber party. How wonderful to have such unyielding faith in your parents’ words, and the world in general.
The doctor who met us in the ER ordered blood work to test seizure medicine levels. An hour later he reported the levels were “extremely low” and we should increase the dose from 4 ml to 5 ml immediately. We didn’t — we knew increasing meds so quickly is unsafe. The next day, a call to our neurologist revealed that there is no test for the seizure medication Avery is taking. The ER doctor screened for a “cousin” drug. That’s like running a test for apples, to look for bananas. The neurologist informed us that Avery had maxed out for this drug for her weight and increasing the dose would be dangerous. Instead he prescribed an additional drug to take in tandem with the one she’s on.
This did the trick and Avery has now been seizure free for over a year.
*A recent EEG was performed and if the results show no more seizure activity, we may be weaning her off the drugs completely…