We went to the neuro last Friday to increase Nathan's VNS setting. We talked alot about how he's doing... cognitively, emotionally and socially. Dr. B asked me how he's doing now compared to 3 months ago and I sort of just stared at her not quite knowing how to answer. I honestly think I'm just in survival mode each day and to see a difference in him from 3 mos ago or even 6 mos ago is next to impossible. I am so focused on today, right now, this second that I can't remember.

But, I will say this - either his tantrums have gotten worse or we just can't handle them anymore. One minute he's completely fine, the next he's literally throwing things at your head and screaming at you... only to then be completely fine again.

Nathan is doing very well at potty training though. The last 2 mornings he's woken up with a dry pullup - but will pee in it if you don't get him to the potty quickly - and that's usually a feat because until he's eaten in the morning, he's a bear. Well, and he'll usually poop in the morning while still in his pullup. Yesterday, I took him out of his pullup and he didn't poop all day. Today, same thing (so far) and that's not good.

We've been trying to increase his fat intake since he needs that to help keep him in a high state of ketosis. Well, despite all the fat pushing we've done, he's still in moderate ketosis instead of heavy. I'm now wondering if the homeopathic meds we've been giving him to reduce the acidity level in his body isn't being counterproductive there. He needs to be in heavy ketosis I believe.

And, since Friday, he's been having more sz's. More clustering of very small complex partials and a few simple partials - and a few generalized ones that will stop with a swipe of his magnet. Well, this morning he had two generalized sz's that were pretty big ones. He came out of the first one before I could swipe him. Maybe 15 minutes later was the second one. I was coming down the stairs and he was standing beside DH while he was changing one of the babies diapers. I shrieked, "HE'S IN ONE!". DH ran and got the magnet and swiped him, which immediately brought him out, but he was really in one. His face was white and frozen and his eyes were completely dialated. He fell asleep after that one, which is another indicator to me that it was significant. So, he didn't have a very good morning. OH, and another thing. When at his previous setting, his voice would soften and vibrate when the VNS was discharging. But now, at this higher setting, it's not changing at all. I have no idea when it's going off, or if swiping him worked. Its frustrating really.

So, in some ways, I feel like we're back at square 1... maybe square 2 since he is potty training. That's HUGE. Now if we could finally, finally get the sz's under control. I also feel like initially after coming off the topamax, we saw an improvement right away in his word recall those first few weeks. Now, I don't think we've made any progress since then. That's disappointing as well.