Kelsey got so close to being able to drive again, just had another 2 months to go until freedom, but as is her pattern she had a seizure on July 5. That means another six-month countdown. I believe that she is having many more seizures than we are aware of . While we were on vacation I had the opportunity to watch her sleep and again while we were visiting my dad this past weekend. She jerks and twitches and moves constantly in her sleep. I’m not talking a little twitch here and there, but full on rhythmic jerks that last anywhere from 30 to 90 seconds. They aren’t the convulsive, whole body seizures, but might be her arm or leg moving in a rhythmic pattern or her arm and hand “floating” above her body. And after a BRIEF respite (maybe 30 minutes), she does it again. And again and again and again. I am convinced that these are sleep seizures. Every once in a while she will wake up in the morning with sore muscles and a bloody tongue and then we know for sure, but with these more mild events it’s hard to tell.
Her neuro started her on Vimpat a few months ago and it seemed to decrease the frequency of her seizures to a degree. We have at least been able to take her off of the Lyrica and the Zonegran with the addition of the Vimpat. She still takes Keppra and Lamictal, as well, but her response and reaction times have improved to some degree.
I don’t know if this is ever going to be something that she can conquer and like I’ve said before, my heart hurts for her. Between all the surgeries, the VNS, and the meds you would think that SOMETHING would work better. But no. As she moves farther into young adulthood, the possibility of SUDEP crosses my mind more and more often. While it’s not something that we speak about, it is a concern that I’ve shared with my husband on more than one occasion. Sometimes this disease really sucks the life of her and sometimes this disease just really sucks overall.