Bad day........

Jymani has been having seizures today! We are unsure why we have not been able to control his seizures, but we contacted his neurologist and she wants us to have a blood draw tomorrow to see what his Trileptal levels are at. Then he will go up to 750mg of Trileptal in the morning and continue at 750mg at night. Dr. Joseph is considering adding Topamax back to Jymani's medication regimen. (He was recently taken off Topamax as that was not controlling his seizures either.) She feels the Trileptal may not be enough to control his seizures. Today was the first day that I was not right next to him for an entire seizure. I noticed it at the very end, I heard him coughing and by the time I got up to him his lips were coming back to color and he became postictal. My heart ached for him as I know how scared he is when he is seizing. I have never missed a seizure! God, I almost feel guilty!! Then about an hour later, he seized again!! He told me he wanted to lay down afterward, but before he went to sleep he said, "I'm sorry dad, I'm tired, I wanna lay down." His dad told him he didn't do anything wrong and that we were just worried about him. My poor baby, he slept for almost an hour after the second seizure. He did not seize again tonight, thank god!! I hope we can get this under control, it's so scary, as if he doesn't have enough to deal with!