Everyone agrees that this is not a diet issue because he has maintained ketosis.
Our new plan is to increase clobazam by another 1/2 tablet at bedtime for one week gradually increasing to a whole tablet at bedtime. So he would be getting 10 mg in am, 10 at noon, and 20 at bedtime. If this doesn't work, then further increases of this med will most likely not work either. The nurse told us that if this doesn't work, we'd have to go to the next step. But we aren't sure what that step is at this point. We will take things one step at a time.
We are praying that this will work and that we won't see any more seizures. Historically, once the tonic clonic ones return it's only a matter of time until the drops and myoclonic jerks return as well. Hopefully the increase in clobazam will stop that.
I told the dietitian today that it's so frustrating because it seems that we are just guessing - just grasping at straws to figure it out.
But he's had such a great day! We are so thankful for his optimism and good demeanor. He is a blessing from God.