When care changes over time


Lillian: Actually that’s a really important point, being on the same team. That’s really hard when you have somebody who does not speak and who does not communicate well with you. We’ve had a quite a few. This is actually a fairly important point. Dilemmas, one recently about how to manage his head hitting, and Michael was of the view that we should be taking him off his medications because he’d reached adolescence and so he should be able to be off the seizure medications. And my view was he’s well-controlled, there’s no side effects so we should be keeping him on because why… if it ain’t broke, kind of thing. And so, we ended up going with decreasing the medications with a view to eventually getting him off, and he started to head hit a lot more. So this gave rise to me calling the neurologist and saying, and I was quite concerned because this becomes an issue when we’re in the store and he starts hitting himself and there’s blood going everywhere and it’s a grocery store; you don’t want blood flying all over the place.

Lillian: So anyway, I called the neurologist and said, “What’s going on?” and talked to the physician assistant, who was just marvellous. And he walked through the whole thing with me and he said the drugs that he’s on, in fact, one of the salutary effects is that they actually control migraines. So, if there’s an underlying migraine, like maybe he’s having migraines and maybe that’s why he’s whacking himself. I didn’t think that was, that theory was going to hold true,  but nonetheless these medications do have a behavioural component to them, which is kind of a positive side effect; they control seizures, but they also can have some sort of behavioural control. So, he suggested stepping them up rather than back. But we went to visit the neurologist and we talked a little bit about it, and she prescribed a new medication specifically for the head hitting. And it became apparent and there were some side effects associated with this, including some irritability—no, I don’t think it was for the [irritability] because it was meant to control irritability—but there was…

Michael:Lethargy, falling asleep.

Lillian: Lethargy. So the first night he was on them, he fell asleep in the bathtub and we had to physically move him to bed. And suffice it to say, he was on the medications for 4 days. The head hitting got way worse; it was just terrible. So now he’s back to the same medications that he’s been, on same level of medications. But here was a situation where you have different opinions about what we should do, what the intervention ought to be, and that becomes really hard because sometimes you just have to, “Okay.” Like, I had to suppress my instinct of what I wanted to do in terms of stepping him down off the medications. I didn’t want to do that. We had a bad experience with stepping him off medications a number of years ago. We had a massive tonic-clonic seizure and ended up in the hospital for…

Michael: But that was after a year and a half of no seizure activity and where he was drug free for the first time in his life.

Lillian: Sure yeah, yeah.

Michael: So it was kind of…

Lillian: Yeah, so it’s just kind like weighing the consequences and the risks, and that kind of thing. And there are different degrees of risk aversion. Like, I happen to be quite risk averse when it comes to that kind of thing. I do not…For me a seizure is something that I do not want to, in any way, precipitate.

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