So close yet so far...

Dr B said we're probably 95% controlled. How distressing that the 5% he's still having is causing so much issue for him.

We've gotten to a place where he's not having the stumbling issues with his meds, but the cognitive increases we saw when we bumped the meds up are gone as well. He's been randomly vomiting also and complaining of his belly hurting. So, not good signs either.

We're taking his valproic acid down - finally! This med never did anything for him, imo, in the first place. I don't believe it's helping the felbatol to work. But, we'll see. hopefully we won't see anything "bad" in decreasing this med. And, it actually might make the felbatol work better.

We have to have labs run though. That won't be fun for him. But, all of these symptoms he's having could be signs of getting toxic on the meds - dangerously. I don't think that's the case but we've got to be careful and check everything out.

There is a new med out on the market, Lyrica. We might try that one next if we don't get 100% control once we're off the valproic acid. The "bad" thing about it is that it can increase generalized sz's. It's good about controlling complex partials. Since Nathan has complex partials that secondary generalize, we have to be absolutely sure that the generalized sz's are fully under control before we try this med.

Damn it's never easy. OH, one good thing about Lyrica is that it can make you gain weight. Nathan is so skinny it's not even funny. That would definitely be a good side effect for him. I'm getting ahead of myself though. That's months down the line IF we decide to try it.

We're just hoping we see good things from the valprioc acid wean. Fingers crossed.

Med increase isn't going so well...

I got an email from one of Nathan's teachers last week letting me know he's been limping tripping and stumbling a lot. I had noticed it the night before but brushed it off to him being tired, as it was on his way to bed when I saw it.

I called the neuro, who was out so I talked to someone in her dept. His walk being affected is most likely a side effect of his meds being too high. We came home from the hospital increasing his 3 doses by 1cc - so we went from 12cc's a day to 15. We had to back down on the middle dose increase right away as we could just tell he wasn't tolerating it.

We've now backed down on the 3rd cc. So, at this point, he's only getting 1 additional cc a day (in the morning).

I don't feel he's functioning as well cognitively as he had been last week. And then to add insult to injury, I noticed him limping last night, just like I'd noticed that one night before bed. He's not doing it all the time - but I wonder if any time is not good at all.

We have an appt with the naturopath on Monday. I'm curious to hear what he has to say. I'll also be calling his main neuro on Monday as well. I have concerns that the felbatol is not interacting well with the valproic acid. I would like to get him off that med. It never gave him sz control at a high level, why would it be working now? Yes, I know the combined effect can be a positive one, but my moms gut tells me no. We'll see. I'll tell ya though, I don't like the stumbling.

Back to progress...

This increase in Nathan's felbatol from last week is undoubtedly doing the trick. For how long, who knows. Of course, my mother is blasting me for not being positive about it. I'm not being positive OR negative... I' m being realistic. I'm always hopeful the latest thing we've done is "the trick" but I'm not naive either.

So, we'll ride this ride as long as we can.

But, last night before bed, Nathan was flipping through, "Are You My Mother" by Dr. Seuss. He turned to a page and said, "that is 'the' ". I turned to another page and asked him if he saw the word "the" anyplace on that page and he correctly pointed it out. So, I'm confident he's now able to sight read the word, "the". I definitely feel like he's back to making progress. His teachers are sending home copies of his behavior chart every day. Its basically his schedule, IE, morning work, speech therapy, recess, lunch, etc. For every activity he completes with the appropriate behavior, he gets a sticker and at the end of the day, earns his choice of free time, or computer time, etc.

For the most part, he's come home with every, or almost every sticker filled in. So it seems like he's showing consistency with his behavior at school too.

The strangest thing I've noticed -- his breath. I've talked to his naturopath about that before. Bad breath is an indication of some kind of unhealthy situation going on - barring "morning breath". Nathans breath, recently especially, was always bad. Didn't matter if you'd just scrubbed his teeth or not. And, two weeks ago when he had pneumonia, OMG, you'd have thought the child was eating straight poop, not to be gross, but wow. It was b-a-d.

Well... no more bad breath. Not even in the mornings. I find that really interesting.

Anyway, fingers crossed we get at least a few really good months out of this recent increase.