Making progress
Maria’s episodes do seem to be getting less frequent and less severe, so maybe the Depakene is working (it is “Depakene” not “Depakane” like I said below, although since were giving her the generic it’s not really even Depakene). Of course, the Trileptal seemed to work at first then it didn’t anymore, so we’ll wait and see. She continues ramping up to the full dose over another three weeks.
There have been a few side effects, but she seems to adjust to them over a few days. The most obvious is that she’s been sleepier, though not as bad as the Phenobarbital days. I also think it upsets her stomach and has been messing with her vision a bit.
We are supposed to be giving it to her 3 times a day spaced 8 hours apart to keep the levels consistent. Realistically we aren’t going to wake her in the middle of the night for medicine, so she gets it when she wakes up, when she goes to sleep, and then halfway in between.
She seems to have been making some progress over the last few weeks. Her weight was up to nearly 30 lbs at the doctor last week. She’s drinking from the straw more and on some days she doesn’t take the bottle at all. She doesn’t dribble her milk very often and doesn’t drool unless she’s distracted by something else. She’s more interested in feeding herself. She’s gotten pretty good at moving food around with her tongue to chew it. She’s been reaching up to be picked up a lot lately and seems to recognize people more quickly. When we put her in her crib, she grabs the sheet and pulls it up to her chin. She helps dress and undress herself. There have just been all kinds of little things like that recently. Of course, they all should be qualified by “when she’s in the mood”.