Whew!

Here's the scoop on todays appointment with neurology:

First of all, I love our neurologist. She's really kind, and I think most of the time she has a clue about what is important to us and why. I really appreciate that.

The good news is that we CAN up the dose of Joel's Keppra a fair amount, as he has gained quite a bit of weight since he was first put on it. Yaaaaay! Keppra is a good med for us, so far it has given Joel NO side effects, not even making him drowsy in the initial period. I LIKE it.

But the biggest and best relief was when we talked over the "plan" with her about how to deal with a situation where Joel is having extended seizures. She agreed that in Joel's case it would be "reasonable" to wait considerably longer than half an hour. She felt if I was monitoring him for any changes, like turning blue, (or the sats going down) and nothing like that was happening, we were ok.

She totally understood that since Joel can easily have ongoing seizure control problems, we would not want to rush in to emerg each time, where she said staff might try and help Joel in ways that were intrusive, unnecessary, or cause Joel distress. She did not feel Joel's seizures were going to cause him enough trouble to warrant heading in to emerg.

And Joel, strangely enough, even cooperated by having one of the exact seizures I was telling her about so she got to see it. She confirmed that yes, this was a seizure for sure, and yes, she didn't feel it was a kind of seizure that would be particularly harmful if it occurred in an extended period.

She did make me promise to keep phoning them right away with any changes in seizure activity, or if the new prescription does not work. Which I do anyway. Good news is that it sounds like since they are increasing the doctors on staff in the department, there is now going to be someone on call basically 24/7 so I can call them if I'm not sure about coming in to emerg or not. And she said she'd send a memo to all the staff about Joel, so they'd know about his situation! (now as long as they read it, cause you already know how doctors are about memos!)

She assured me that ambulance staff DO carry the rescue meds (which another doctor had told me was NOT the case) (so you are right, Heather). She said she'd still like to hold off on giving me the rescue meds, as they usually don't prescribe them until patients are at least 10kg. But if Joel reaches that weight, she'll likely be ok with it. I don't care, as long as the ambulance has them.

So nothing but good news all around. I was very relieved that she understood about us not wanting to rush into emerg unless it was really necessary or helpful. It always makes me happy when the doc thinks my actions were "reasonable" ;) . I was even more relieved that she didn't think the long bouts of seizure activity were "particularly harmful" though "we want to try and avoid them." It is just so relieving to talk to her, she is so calm and matter of fact. I don't even get (as my friend Jen calls it) "crazy eyes" from her about how we are handling things with Joel.

Whew. Thank you God for good doctors who try and help you make the best of the situation!