Well her pulmonologist agrees that she's probably having seizures. I told him about how she did that big jerk with one of them and with another her eyes were twitchy. He's going to get in touch with her neuro and see if he'll just treat them without catching them on an EEG. We do have advancement directions for the topamax, but in our experience, different drugs work for different types of seizures. So we'll see if he wants to start a new one. He also told us we could try the Robinul again. But to start at just 1ml twice a day to make sure it isn't slowing her gut down too much. Other than that, it's all the same. Same breathing treatments and up to 3 L of oxygen.
Charlie's nurse expressed concern over her not having the RSV shot and he said we could probably get it for her if we *really* wanted it, but he said it's pretty late in the season now and that diligent handwashing is probably more effective anyway. And she's already had an RSV-like virus and handled it ok. We don't do any vax's so it was nice to have a doctor side with me on that one and not look at me like I've got 2 heads for refusing them. LOL
We have the sleep clinic next week. We don't know if they'll want a repeat study or if they'll just decide what she needs based on her last one. I'm hoping for a new one because it's been 9 months and Charlie has changed a lot in the last 9 months!