Monday, November 20, 2006

Done with Lamictal

We continued to lower John's Lamictal, to the point that his last dose was Friday night. He is suffering some withdrawal symptoms, including stronger and more numerous seizures. We're crossing our fingers that this will subside over the next couple of weeks. He seems ridiculously happy the last couple of days, though, so it's a good trade-off as far as I'm concerned.

John's latest ferritin level came back at 36, which is much better than before but still on the low side. We went through his seizure journal and it looks like his seizures started getting worse when we started giving him an iron supplement. So, we stopped giving him the iron supplement. The seizure count has remained high, so we might have to start him back on the iron supplement soon. It didn't seem likely that an iron supplement could cause more seizures, but you just never know.

John has now gone to his preschool twice without Yoshie. They say he did fine. That's good news. We have no idea what they teach him there, but the fact that he didn't scream the whole time is great. We also have an appt. next week to meet with another special-needs preschool.

John's second attempt at the organic acid test also failed. His tropic acid level was too high. The lady at the lab called the maker of John's seizure meds to see if they might be causing this, but they definately aren't. She then called other labs that do organic acid testing to see if they had ever run across elevated tropic acid levels. Well, no-one has ever seen this, except when certain meds are being taken. They wanted to make sure that no-one was "sneaking" meds to John, as they didn't have any other explanation. That's ridiculous, of course. So, we have something to pursue again. I suspect it might be something in his Chinese herb concoction. I sort of hope not, though, as a result like this might be a crucial key to figuring out what John's underlying problem is. To us, it still seems like some metabolic problem. All these things must mean something:
1) Very low ferritin levels, despite getting adequate iron in his diet.
2) An IgG reading of zero.
3) Elevated tropic acid level, which no-one seems to be able to explain.
4) The fact that AED drugs and the keto diet seem to be completely useless against his seizures.

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