Saturday, November 10, 2012


We are weaning Jonathan.  OK, since he's ten, that requires some explanation.  Jonathan has been on 2 seizure meds for a number of years:  a liquid, and a pill that we crush into the liquid.  He's been taking them both twice a day for a long time.  But now that he has gone 3 years without any seizures or related symptoms (YAY!!!), the pediatric neurologist is gradually weaning him off the pill that he's been taking.  So instead of one pill twice a day he is taking half a pill once a day; and when we see her next week she will likely stop that one altogether.

We never noticed any particular side effects to either of the drugs Jonathan's been taking, but since he's going off the one drug, his behaviour is definitely changing:  he is a LOT more hyper.  Jonathan has always been very social but now he yells at, and often runs after, people going by on bicycles; he calls out to people walking past even if they are a block away; he goes up to people at church (not just those he knows), taps them on the arm and says hi.  It's a little disconcerting -- it's also worrisome because chasing strangers can be dangerous for him and them, not to mention being socially inappropriate.  (It might be kind of cute when he's ten, but not when he's fifteen or twenty!).  I said to someone that when I walk to or from school with Jonathan I do "interval training":  I walk very slowly while he stops to look at garbage trucks or laundry hanging on clotheslines ... then I sprint to catch up with him when he decides to run after someone.  Again, this is one thing when he's ten, but before long I won't be able to catch him.

So we're dealing with a whole new phase here.  It just seems that when one thing improves, something else crops up that we have to deal with.  We're hoping that the doctor will have some insight into this; we're also hoping that when the medication is completely out of Jonathan's system, he'll "normalize" somewhat.  But for Jonathan, what's normal exactly?  There's a lot to figure out.

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