Josie Update

Josie started a third medication (Lamotrigine) on Monday, after reaching the maximum dosage for her weight of the first two anticonvulsants without achieving seizure freedom. She is starting at a low dosage because of the potential harmful side-effects, so it will be at least a month before she is at a dose that might help her. It will be 3-4 months before she reaches the maximum dosage for her weight, after which she will be admitted to the hospital again to start the ketogenic diet.

Other than "the break" (how we refer to those blissful 19 days she was seizure-free) and a brief 3-day period that followed, she's been in roughly the same state since mid-October: averaging 20 absence and drop seizures per day, generally lacking in attention span and often having difficulty getting words out or holding prolonged conversations. The break definitely gave us a clearer picture of how much the epilepsy is affecting her, as during this period she was voraciously absorbing books (asking Brandie to read her four in a row, with rapt attention) and carrying on extended conversations with fairly complex trains of thought.

We've come to refer to her states as "cloudy" and "clear", as she seems 'not present' even when she is not visibly having an absence seizure. It's hard to say how often she is actually seizing, as her EEGs have showed several minutes of activity when we were only witnessing a brief 3-5 second event, but it seems to be a lot of the time. She is understandably frustrated by it, and frequently becomes inconsolable by small things. At times she doesn't like to be touched and pulls at her hands when she is frustrated, as if trying to pull something off them. She also doesn't like to wear her shoes, which thankfully isn't the worst thing here in the land of bare feet.

It probably goes without saying how bittersweet it has been to see her seizure-free and know she is in there somewhere struggling to get through the electrical storm in her brain, and how disappointing and frustrating it is to have gotten that window only to have it slip away again. At this point we're not sure what the odds are of the next medication working given that she seems to have rapidly developed a tolerance for the Epilum, but we think it's somewhere around 5%. But thankfully, hope springs eternal and we will keep trying whatever we can to connect with her during those blissful clear parts of her day and shepherd her through the cloudy parts.