Rubinstein-Taybi Syndrome: Behavior | Cincinnati Children's

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Rubinstein-Taybi Syndrome: Addressing Behaviors in RTS
Craig Erickson, MD, UC Department of Psychiatry and Behavioral Neuroscience: "We really think of medical and mental health in the same area. And we would never want folks to think that if they’re having a concern that their child with RTS is anxious, or sad, or why are they having this or that behavior, to minimize it or not think about it."
Jennifer Smith, PsyD, Program Director, LEND: "You know, this idea that when you’re coming to see somebody for behavior that it’s your fault. I kinda talk about that, you know, as I build a relationship with families, that, you know, they didn’t do anything wrong. That there’s all of these contributors that we have to think about."
Bill Mann, Sophia’s parent: "Every one of her behaviors has a reason. The hardest part is remembering that each one of them does have a reason, and why is she doing that? What is she trying to communicate?"
Dr. Erickson: "Recognition can be hard. Because if you’re working in populations that can’t apply tell you, 'I’m feeling sad. I’m feeling anxious. I feel like I’m having a panic attack.' You have to kind of closely observe and look at other signs and ways to understand what’s going on. So we look at things like sleep patterns, eating, change in bowel or bladder habits. We often look at are you doing things that you used to like to do in the same way? That means different things to different people. If you really like to twirl shoelaces, great. If you’ve stopped twirling shoelaces, that’s a major issue. That could be a sign of depression. So you have to meet people where they are."
Smith: "We do a lot with kids, obviously, but we change the behavior of kids by changing behavior of adults around them and changing how we set up the environment to make them more successful."
Joan and Christopher Edelenbos, Emma’s parents - Christopher: "If she gets upset with something, she will lash out." Joan: "She’ll get angry and walk away and throw a fit, or cry, or run to her room and cry."
Mann: "Throwing things, pushing things, slamming doors. That’s how she communicates that she’s scared and anxious. She is verbal, but she can’t really verbalize deep emotions very well, so in her world, that’s how it’s manifest."
Jillian Stockberger, Rhett’s mom: "He usually doesn’t bite people unless he’s angry if he knows them. But if it’s a stranger, he goes after their legs, and I’m like 'What are you doing? That’s not how we say hello' So I’m like I don’t know if we need to like find a way for you to say hello in a proper, so just trying to like navigate that."
Smith: "So it’s kind of a triage process that we use. And maybe it would be that they would be more accepting of speech and occupational therapy first and then if that doesn’t work then thinking about behavior therapy and then if behavior therapy doesn’t work, then medication."
Mann: "It’s funny. I always thought the meds would take her down to such a notch where she was not herself anymore. That’s not remotely the case."
Dr. Erickson "The goal is the least amount of medications at the lowest dosing possible. And I think the other goal is to really define what target symptom are we treating? And what time period do we need to evaluate it? And then, if it isn’t working, move on. So it’s always evaluating progress and not taking a medication for the sake of taking a drug."
Smith: "So there’s a catchy little acronym that we use to think about why the behavior is happening and that is referred to as MEATS. Starts with medical, then we look at Escape, so what is it they are trying to get out of? ‘A’ is for attention. T’ is tangible, so that is stuff, so getting something tangible. And then ’S’ is something to think about for our kids as well, and that’s Sensory. Like the hand flapping, the body rocking, they do that because it just feels good. So it’s really important to think about that MEATS and the why the behavior is occurring so we know what interventions to try."
(text) MEATS
Medical
Escape
Attention
Tangible
Sensory
Dr. Erickson "You know, there’s a bit of a like a detective nature to it, right? And there’s some trial and error. But it’s understanding a person in the context: What do they normally enjoy? What’s their routine like? And what’s different?”
Smith: "We spend so much time focusing on what people and kids do wrong, and it’s so important to think about how can we switch that and catch them being good so they get praise for the behavior that you want to see more of, and that’s especially true for our individuals with RTS is that they love that attention."
Dr. Erickson: "Anything that is interfering with your ability to have a quality of life, to participate in activities, to do things with your family, to be independent as you can otherwise. And some of those interferences can be targeted with medication, combined with other therapies. It's really our role."