Tag Archives: risperidone

Re-Evaluating

I used to love Magic Slates when I was a kid – those black wax drawing boards with gray plastic sheets on top. Not so much because if I messed up, I could start over, but because I could adjust my drawing as I went along. If I started at the top and worked my way down, I could lift up the film a little bit to make changes. Nothing was set in stone.

And so it is with behavioral medication. If a certain type isn’t working, you can try another one. If the dose doesn’t seem right, you can increase or decrease it. And when you think you’ve reached a point where it’s no longer necessary, you can stop taking it. Or, you can ask your mom for six months until she agrees.

Nigel had an appointment with his psychiatrist on Friday afternoon. As we often do in that office, we waited for quite some time before she opened the door to the waiting area. And then she called in someone else whose appointment, we learned, had been scheduled forty-five minutes before ours. I looked at the doctor, and she suggested that we reschedule, which I got up to do. I was shocked to find that she had an opening just a few days later, and we took it.

We got back in the car to leave, and Nigel began his negotiating process. He’s been doing this with me since at least October – telling me that he wants to stop taking the medication, that he doesn’t think he needs it anymore. And I respond the same way, telling him that he feels this way because the medication is working. But this time was different. This time I thought about the fact that he has been on Risperidone for fourteen months, and in the last twelve months, we have not increased his very low dosage. During that time, his height has increased by five inches (!), and his weight accordingly. At this point, the medication is probably having minimal effect. And even though it helped him when he really needed it, I’ve never felt comfortable with him having it in his body, and I’ve looked forward to the time when he could discontinue taking it.

And I think that the time has come. He has enough medication left to gradually wean himself off of it for the next three weeks. Half of that time is Spring Break, so it will be a low-stress time for a transition. And we’ll be checking in with his doctor tomorrow to confirm our plans.  

What’s comforting is knowing that, as with my childhood toy, we can always start over. If it turns out that we were a bit premature and that Nigel still needs the Risperidone to help regulate his behavior, we can always have him start taking it again. But we wouldn’t know unless we tried, so we’re going for it. He thinks he’s ready, and now, so do I.  

The Regulator

“Did you refill your pill organizer for next week?” I ask Nigel as he walks into the kitchen.

“Not yet.” He walks over to the cupboard where we keep his bottles of medication, takes a bottle out, and proceeds to shake it vigorously as he walks to the kitchen table. It sounds like he’s got a maraca in his hand. Then he puts the bottle down, opens it, and begins filling his weekly pill container.

Two weeks ago, we saw his psychiatrist and discussed weaning him off of one of his medications – Zoloft. He had been taking it for almost two years, and had been at the same dosage for over a year, in spite of the fact that he’d grown a lot in that time. The OCD behavior he’d exhibited that made me realize he needed the medication (systematically pulling his hair out and eating it) is no longer present at all, and hasn’t been for a while.  The doctor concurred, and told us to halve the remainder of what Zoloft we had, and Nigel would be completely off of it in two weeks. The Risperidone, which he has been on for almost a year, he will continue to take for several more months at least. I figured that it would take him about two years to learn to regulate his behavior himself, which is why he started taking it.

Before leaving, we stopped by the front desk to schedule our next appointment two months out, as instructed by the doctor. The scheduler, a friendly but disheveled-looking woman with erratic movements (tics, possibly?), gave a little “Yay!” and started looking through her agenda. I recalled her reaction six months previously, when the doctor told us to schedule the next appointment in three months, how the scheduler actually whooted and did a little happy dance. I politely smiled in response, not sure what the celebration was about. Yay, we don’t have to come back for three whole months to a place that Nigel despises? Yay, you don’t have to see us again for three whole months? Or Yay, we’ve reached a positive point with the meds and they don’t need to be tinkered with for a while? I’m guessing it was the latter. But still. My day of celebration will come when he no longer needs the medication at all.

And with the successful departure of Zoloft, we are getting there. The fact is that, even at small doses, the Risperidone is something that needs to be watched. Nigel was required to have blood drawn last week for several routine tests and had to see a specialist to make sure the drug is not affecting his joints, among other things. The fact that he developed a trigger finger on one hand and a sore joint in one foot, both in the past year, disturbs me. I don’t like this stuff. I don’t like pumping his growing body with chemicals.

I’m certainly not against medication; it is integral to the functioning of those who need it. I have seen how much it helps, and I know that some children truly need it for their conditions. Nigel needed it to stop pulling out his hair and eating it. Then he needed it to help with his behavior regulation, since his autism prevented him from regulating it on his own. But he’s learning how. And, as he says, he learns by doing. Each time he demonstrates appropriate management of his behavior, he learns from it. Yes, for now it’s facilitated by his medication. But as he learns (and as his dosage is not increased with his growth), his behavior regulation is going to become more and more his own doing, not that of the medication.

“How much longer do I have to keep taking this?” Nigel asks after he swallows his morning dose. He knew that he needed it a year ago and requested it, but he believes that it makes his scalp itch and wants to stop taking it. “Because even on days when I forget to take it, I’m still calm at school.”

“Well, that could be because it’s still in your system. But I also think it’s because you’re learning to regulate your behavior yourself.”

“Yeah. I am. I don’t get angry like I used to.”

I tell him that we’ll talk to his doctor about it at our appointment in January and see what she thinks. And maybe I’ll have my day of celebration sooner than I’d originally thought.

Suspended Reality

I sit in my quiet house watching snow falling on branches of trees that had already started blooming again. But the really unusual part of that sentence is that one word – “quiet.” That’s right – my sons are not home this week.

They visit their father in LA for several weeks every summer, as well as Spring Break and Christmas. I’ve mentioned The 700-Mile Kid Swap before, as well as what happened the last time we did it. But this time was by far the most beautiful (scenery-wise). We took a little detour into north-central California to meet up with their dad at a different spot, since he wanted to take the boys to visit his mother for a few days. And the drive there was simply incredible. At one point we drove through seven miles of orchards. Yes – seven miles of orchards one right after another! And through the trees we could see views of beautiful Mt. Lassen, which Nigel and I climbed last summer. Nigel liked seeing Mt. Lassen, but Aidan was enamored with the orchards. “I would love to live here,” he said in a dreamy voice.

So now they are away this week, and my home is quiet. And I have tons of things to do to fill that time, but I feel like I’m missing an arm and a leg with the boys gone, and it’s hard to get anything done that way. I don’t feel like myself when they’re not here. I’m living in a suspended reality.

I sometimes wonder if that’s what life is like for Nigel – he has his way of viewing the world, and a lot of it is very different from how others view it. And I especially wonder how it is for him being on Risperidone. He is calmer, yes, and can regulate his behavior a bit better, but he is not himself. It is a subdued version of him, a suspended reality.  His eyes – and his demeanor – are different. I know – this was what we wanted. He wanted it, too. We wanted the change in behavior. But I didn’t know there would be a change in him, in his countenance.  

Again I remind myself that he doesn’t need to be on it forever – just a couple of years, I hope, until he learns to regulate his behavior himself. And eventually he will, of that I am sure. He says he can feel the difference in himself, and he is satisfied with the results, which is most important. But I’m looking forward to the day when he no longer needs to take it, and I can have the real Nigel back. For now, though, I know that I’ll still enjoy the company of the modified Nigel. He may not appear to be himself right now, but he’s still unequivocally Nigel.  And I’ll smile as I think of him at the sunny beach this week, while I watch the snow fall.

New Year, New Behavior, Part 4

There are times when we wonder why we waited so long to do something. Why we fretted, why we were hesitant. This is one of those times.

My family’s sensitive genetic makeup is such that we respond almost immediately to anything in our systems, whether it’s ibuprofen, caffeine, cold medicine, or stronger stuff. With prescriptions, doctors warn us that it may take two to three weeks to see any differences. With us, it’s often by the end of the second day. For instance, eleven years ago when I was on Zoloft for OCD and anxiety, I felt noticeably better on the second day after starting it. I felt so much better that I wished I had started sooner, that I hadn’t kept putting it off.

Last weekend, Nigel began his experience with Risperidone. His doctor started him on a very low dosage, and the literature included with the prescription mentioned that we probably wouldn’t see any behavioral changes for about two weeks. At the end of the second day, I could already see a difference. He was not argumentative. He was more complacent, relaxed. He was agreeable. His behavioral therapist also noticed it at his social skills class the next day. This is the kind of improvement we need for him to be able to go back to regular school. Of course, now that his body has adjusted to the very low dosage, he is no longer as agreeable as he was for the first few days, which I expected. We see the doctor in two weeks whereupon the dosage will be increased. But the process has begun. And it’s working.

And so, since I can already see how much this medication will help Nigel with his socialization goals, I can’t help but wonder why I was so reluctant to get him started. Why didn’t we do this before? Why did we constantly bang our heads into the wall (literally) in frustration, when we had options? Why was I so fearful of going this route? I don’t really know, but it’s not worth it to me to obsess about it any longer. Life is about learning. We learn and then we continue on. We make adjustments and we move forward.

Part of moving forward for me is recognizing when I need to take a break and then actually doing it. We tell our kids to let us know when they need a break, but we tend to ignore our own needs. When you have a lot of plates up in the air, it’s hard to justify walking away from them to take a break. But I know I need one, and I know my boys do too. So we’re packing up and heading out. This little clan is going to the coast for the weekend. We’ve rented a small cabin right on the beach, and my sister and brother-in-law are joining us. It’s a place we’ve been to before, one we all love, but we haven’t been there for three years. And that’s just too long. Nigel came to me last night at midnight, red-eyed, asking, “Mom, are you sure you remember how to get there?” He is so excited; he’s beside himself. This morning he actually said, “I am overzealous about going to White Rock.” He and Aidan have been counting down the days. So that’s how I know – we all need this. And I shouldn’t have waited so long to do it. So whether it’s trying new medication or taking a break when we need to, I’ve learned not to put it off. I’ve learned not to be afraid. I’m letting the plates fall where they may, and we’re taking off for a few days. Ciao!