Mixed Bag

The other night Teddy was quiet, which always makes me think he's up to something naughty. But this night he had a small piece of lined paper he'd found & a pen & was writing something. I didn't think much of it, I just figured he was drawing a sun again (pretty much an X with a lot more lines). After about 5 minutes of intense work, he said, "Look what I did!" I walked over to the table & saw he'd written a sentence. He told me what it said, "The zoo has a lot of animals." Other than the word for animals, the whole sentence was legible. I couldn't believe it! This is the first time he's written something like that on his own, & he did a wonderful job. It really blew me away!

And then last night he was able to explain to me some of his frustration level. That's hard for anyone to do, to be able to see why you act the way you do. But he did it. He said when I ask him to do something he can't do it because of something else (he's distracted) & then I get frustrated with him because he isn't doing what I asked him to do, & he gets frustrated back because I'm mad. I kinda already knew this (I've been trying to be more patient with him) but to hear him say it himself was wonderful. He's an amazing guy, being able to put into words something that complex. I truely couldn't be prouder of him.

Now for the downer stuff: we decreased his AM dose of seizure meds (Lamictal) on Saturday morning because he was having horrible, uncontrollable neurological ticks since the last increase. For example, he couldn't stop clicking his teeth Friday night--he could barely say anything without clicking. And the day before he couldn't stop blinking. After we reduced his dosage the ticks went away by Monday the 11th. But then they thought he had a seizure at school that day. He fell over in his chair. He didn't hurt himself, luckily, but it was of course worrisome none the less.

I called the neuro yesterday & talked with her RN about the whole situation. The Dr.'s recommendation was to start a second seizure med, Topamax. The problem is, it has horrible side effects: decrease in sweating, loss of appetite, & worst of all decrease in concentration. Decrease in concentration! Like we don't have enough of an issue with that already! I don't think his concentration level can get any lower, but I sure don't want to find out.

So the decision right now is to just hold steady on the current Lamictal dose & see if we start seeing seizures again. I've got my fingers crossed that Monday's event was not the start of a trend, & that his seizures will go away. I know it's a long shot, but I've got to hope. Even if he just starts having 1 seizure a week, & think we can hold off on more meds. But if they become more regular & start disrupting his school day, we'll have to seriously consider the addition of the Topamax.

Please wish us well!