Medications Dr. Hendren: Thanks for allowing us to, um, let me know how it’s going with him. Mihir’s Mother: Dr. Hendren always is good and contacts me again. Dr, Robert Hendren: I’m a child and adolescent psychiatrist. My focus has been on looking at novel treatments for autism or novel ways to determine which treatments work for which kids. Dr. Hendren: So how have things been going in terms of behavior? Visual: Mihir, age 13 Mihir’s Mother: One day the teacher called me, and she said, ‘He’s really out of control. You need to come and get him.’ Mihir: Father’s Day. Mihir’s Mother: So he even hit teachers and he will do something at home once just like that. Suddenly like he’s a different person. , he’s aggressive on other days. So those days that I thought I would take your advice on, uh, if there’s something that you’ve done with the sedative. Visual: Bryna Siegel, Ph.D. Mihir’s Mother: It just kind of at least takes the edge off. Dr. Hendren: Yeah. Mihir’s Mother: If he’s being self-injurious. Dr. Hendren: When people come to see me, they’re coming having tried everything else. They’ve tried behavioral treatments. The school is exasperated. They’re exasperated. And so they want to talk about the pros and cons of trying medication. I think then it’s a matter of trying to define the symptom that they’re hoping could get better. Usually there’s more than one, but I think of five primary symptoms. Visual: Cognitive Disorganization Dr. Hendren: Cognitive Disorganization. It helps to have parents engaged and not just saying, ‘Is their autism better today?’ It’s, ‘How ’bout their irritability? How would you rate that on the ten-point scale?’ Mihir’s Mother: Some days he’s much calmer, and if he has structure and everything, we have, like, almost like regular days, so. Mihir, that’s too loud. Mommy’s talking. Dr. Hendren: So you say he has some good days, then he has some days that are not so good. Mihir’s Mother, talking over Mihir: I’m sorry, no. Mahir’s Father: I think I’d better . . . Mihir’s Mother: Are you feeling a little nervous? Mihir: No. Mihir’s Mother: Then? Mihir: This is broken now, I think. Dr. Hendren: So the two drugs that have been approved by the FDA for treating irritability in autism are Risperidone and Aripiprazole. Those are the generic names; the trade names are Risperdal and Abilify. Mihir’s Father: Um, is there like, um, when they get in all these meds and all that, is there like an exit strategy at some point? Dr. Hendren: Yeah. I do find a lot of the kids grow out of the need for it as they get into adolescence further. Not all of them, but hopefully. Mihir’s Father: Yeah. Yeah, yeah, yeah. He would benefit more, I think, like until now he has it every day. So he still has days which are, they don’t go well. And he is still having all these medicines, but he still has the bad days. So then you kind of start to wonder. Dr. Hendren: It just seems like it would be good if we could lose those few bad days. Mihir’s Father: Hmmm. Dr. Hendren: With children with autism, we tend to start at the low dose and work our way up slowly. Children with developmental disorders are much more likely to get side effects from medications. Visual: Nicholas, age 21 Nicholas’s Father: We’ve got pictures of him from three years ago. He was easily seventy pounds lighter. He could do rides at amusement parks still. I mean just, wham, something happened. Dr. Hendren: It increases the risk for Type II Diabetes, so those aren’t insignificant concerns. There’s a very rare side effect called tardive dyskinesia where people can develop a movement disorder that’s a kind of writhing the jaws and lip smacking, and there’s the potential that they could be life-long movement disorders. So. Nicholas’s Mother: I give him the last Risperdal, and I just kind of watch him. After two days, um, the sign I start to see is the anxiety. It’s not the aggression; it’s the anxiety. He’ll start to do a lot of finger biting and a lot of knuckle biting. It’s some of the outbursting and then of spitting. Dr. Hendren: It’s a matter of saying, for some of them we can know in as soon as a few days; for some it might be as much as a month. But we’ll know if the medicine’s going to make a difference, then weigh the risks/benefits. Then say if he’s made this much difference, this much improvement, if that med has made that much improvement, I can’t deny my child that, or me that. Or you can say, the side effects are unacceptable to me. I’m not going to do that anymore. Nicholas’s Mother: He was pinching everybody. He was starting to grab my hair in the car. Nicholas’s Father: Oh, good God. Dr. Hendren: Yeah. Nicholas’s Father: And we wouldn’t put him on medications. Nicholas’s Mother: And the Risperdal (snapping fingers) stopped it like that. Risperdal was only liquid, yeah, and he did ten cc twice a day. Nicholas’s Father: How? Ten cc twice a day. Nicholas’s Mother: Ten cc twice a day. They just kept changing the dosage. They tried upping the dosage, and it actually made him worse. Dr. Hendren: Often children with autism, especially if you go up on the dose very fast, can become more anxious, can become unglued. Nicholas’s Mother: The ten-day mark, they go for ten days, crash. Then we change the dosage. Dr. Hendren: Yeah. Nicholas’s Mother: Ten days, bam, crash. So I think we kind of followed that same pattern. As soon as you change the dosage, it worked until his body got used to it, then it quit working. Dr. Hendren: Sometimes parents come and say, ‘I don’t want to do meds now,’ so that’s great. You know, I’m not pushing you to do meds now. Nicholas’s Mother: That was the one agreement Carl and I are on: less medication, less is more. Dr. Hendren: Yeah, I think he’s on such a low dose, let’s not worry about that for awhile. Nicholas’s Mother: O.K. Dr. Hendren: Let’s just make sure he gets stable and does well and gets into his school. If he’s still doing well, then start dropping the level slowly over time. Nicholas’s Mother: O.K. Dr. Hendren: And I’m not even saying that you need to think of using meds is a commitment for a lifetime or for a few years. As we’re beginning to think about nutritional kinds of interventions or what have sometimes been called biomedical interventions, how do we push back against the process that we understand increasingly as a gene/environment interaction, to help the body not necessarily using big-gun medications, some of which we don’t know enough about to know, ‘Are they fully effective?’ but we know enough about to know, ‘Are they safe?’ For most, I would wind up at least suggesting that they consider Melatonin. Studies have indicated about fifty percent of kids with autism, maybe a little more, who have sleep problems benefit from Melatonin. Dr. Hendren: So, uh, have you tried Melatonin before for sleep? Nicholas’s Mother: No, what is that? Dr. Hendren: You can buy it at the store, at the health food store. It’s a . . . Nicholas’s Mother: If it’s at the health food store, I’ll do it. Dr. Hendren: Alright, it’s at the health food store, and then it doesn’t work as well at sleeping all the way through the night, but it will help him fall asleep. Nicholas’s Mother: Well, once he’s asleep, he’s out. Dr. Hendren: Yeah. Nicholas’s Mother: There’s no waking this kid up. Once he’s out, he’s out. Dr. Hendren: I think parents want to do everything they can to help their child. Leave no stone unturned. Keep an open mind. And for me that’s been my motto. Nicholas’s Mother: Nicholas, this kind of proves that not everyone falls, with autism falls into the same pattern. You always have those one or two, and even his teacher will tell you that. Nicholas does not follow the norm. Nicholas’s Father: Hey, calm down. Thank you. Nicholas’s Mother: If it’s, if there’s something to be tweaked or some way to be reversed, it’s Nick that’s going to do it. Dr. Hendren: In autism, you know you’ve heard this saying, ‘You’ve seen one child with autism, you’ve seen one child with autism.’ Working with a doctor who knows what they’re doing, and I think that’s a really important part, someone who can monitor those side effects, can make sure they’re O.K. I think parents and doctors together can help make a good decision about, about when to use medications or not.