As of yesterday, John is taking 75mg Lamictal per day. The therapeutic range for Lamictal is 5-15 mg per kg. John is about 13kg, so he is just over the minimum therapeutic dose. It took him 2 months to get to this point. Ironically, yesterday was his worst day of the week. I don't think it means anything, as it takes a few days for the drug to build up in his system. But still, it doesn't leave us with a lot of optimism that things are going to get better this week.
John did do somewhat better last week than the 2 previous weeks. Hopefully, he's turned the corner and we'll start seeing some consistent improvement now.
We saw the doctor last Monday and had his VNS adjusted again. It is now set to go on 21 sec, off 30 seconds. It's set at 1mA, and the magnet is set at 1.25mA. I think it does bother his throat a bit now, and he coughs every now and then. No detectable voice change yet. So, I don't think it's doing anything yet, but hopefully we start to see some gradual improvement after a couple of months. Our next appt. is not for another month. At that point, the VNS will have been on for almost 2 months, and he will be at 125mg/day of Lamictal. If we don't see some significant improvement by then, I think he'll change the VNS back to a more traditional setting (on 30sec/off 3 minutes) but at a higher ampage. And, we may add another drug and start getting rid of the Lamictal, though I'm not sure if he'll want to try an even higher dose before giving up on it.
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