Seizure control? Nope, and we're still searching for answers.
His typical pattern is to have absence seizures throughout the day, and about 1-2 days a week he'll have a bad cluster day. These cluster days aren't good. He'll have multiple tonic clonic (grand mal) seizures, some back to back, some a few hours apart. Each of these bad days results in rescue meds needing to be given. We used to give him Ativan to stop the clusters, but I can't stand the side effects. It takes a few days for this med to work out of his system, and makes him extremely disoriented. We mainly use midazolam now. It's quick acting but doesn't last as long in the body, so our son may have a cluster a couple of hours after the previous.
The cluster days always put me on edge. They are also the main reason we decided to stay home for Christmas. If our son has too many seizures back to back or if the rescue medication doesn't work, he could require emergency care. The chances of us having to call an ambulance are high whenever a cluster day appears, so we tend to stay close to home.
All our current maintenance medication:
Our son also receives an IVIg treatment, which I can explain more in a later post.
We joke about how we feel like a pharmacy, which isn't too far from the truth.