Transcription:

Tiffany Kaczorowski (Host): Welcome to Inside Pediatrics, a podcast brought to you by Children’s Hospital of Alabama, in Birmingham. I’m Tiffany Kaczorowski, and today, our guest is Dr. Jan Rowe who leads the CBIT Clinic at Children’s. That stands for Comprehensive Behavioral Intervention for Tics. She’s a Doctor of Occupational Therapy and was the first OT in the country to coordinate a CBIT program back in 2010. Dr. Rowe now trains OTs all over the US to work with children who have Tourette’s Syndrome and Tic Disorders. Welcome, Dr. Rowe.

Dr. Jan Rowe (Guest): Thank you.

Tiffany: So, Jan, you have personal experience with tics?

Dr. Rowe: Yes, I have eye tics and mouth tics that I do, and I use the exact same strategies that I teach kids in clinic every day to manage my tics. I don’t have to manage them every day, but if I haven’t slept well, or if I’m under a lot of stress, or excited about something --

Tiffany: Sure.

Dr. Rowe: I tend to tic more and have to use my exercises. I think that that helps a lot of times in clinic because it puts parents at ease to see me across the table --

Tiffany: As an adult?

Dr. Rowe: Exactly, as an adult who has tics currently. It hasn’t interrupted my life or my ambitions. It’s not one of those things that you have to have a disorder to be empathetic or to be able to work with someone, but I think it does help alleviate some fears for parents.

Tiffany: Absolutely, and I would think one of the biggest fears as a parent would be when they hear Tourette, they think of cussing. Is that common, the cussing tic?

Dr. Rowe: It’s not. It’s called coprolalia, and it occurs in less than 10% of the time.

Tiffany: Okay.

Dr. Rowe: It’s one of the more infrequent tics, but it’s the one that gets all the media attention, and it’s the one that people know about, so it’s the one that is always in the back of parent’s heads. A tic, is a tic, is a tic, so it doesn’t matter if it’s a cussing tic, if it’s flipping the bird, if it’s a shoulder shrug, or an eye blinking tick, we treat all tics the same. We try to tell the child that, look this is a tic, you’re not doing it on purpose, you’re not going to get in trouble for this. Let’s just learn how to manage it.

Tiffany: Let’s talk about tics versus Tourette’s Syndrome. What is the difference?

Dr. Rowe: Okay, so, Tic Disorders are the broad umbrella to which Tourette’s Syndrome falls under.

Tiffany: Okay.

Dr. Rowe: I guess, in the broader sense though, the real difference is that Tic Disorders are primarily just the tics themselves. Tourette’s Syndrome is – as it says, it’s a syndrome, so there are many, many diagnoses that can accompany the tic disorder or the Tourette’s Syndrome, as well. So usually, what brings the kids to our clinic are the tics because they’re bothersome. The child doesn’t like having the tics, they’re being made fun of, or they’re being mocked, or possibly, there even causing them physical pain. Once we teach the child how to manage the tics, then it’s all the other stuff below the surface that typically is the more problematic for both the child and the family, and those things that are going to be more lifelong. If it’s a diagnosis of ADD, or ADHD, or OCD, or anxiety, those are just the more frequent, coexisting conditions that occur.

Tiffany: Right. Now, I remember when we were at the American Academy of Pediatrics, their national conference in Chicago recently, one of the pediatricians who specializes in treating children with ADD and ADHD with saying that sometimes children who are on the medications for those disorders will tic or will start ticking.

Dr. Rowe: Correct.

Tiffany: And so then the parents become worried about that, and they want to pull them back and take them off of the ADHD medication.

Dr. Rowe: Exactly, and what we know from the literature and from the science is that the stimulant medication doesn’t cause the tic. It may sort of uncover the tic if you will, but if left alone and on the medication to adjust, the tics will settle. But as soon as the parents see the child ticking either for the first time that they’ve realized or possibly an exacerbation of tics that have been – that they’ve noticed over the years but haven’t really been a big deal. Now they are, and they immediately relate that to the co-occurrence of taking the medication and want to take the child off of it.

Tiffany: Okay. And that can lead to a whole host of other issues --

Dr. Rowe: Absolutely.

Tiffany: if they’re not focused --

Dr. Rowe: Right.

Tiffany: and then they’re getting in trouble at school --

Dr. Rowe: Right.

Tiffany: having behavioral – so they need to stay on that medication?

Dr. Rowe: Yeah. Absolutely. In fact, if I see that child in the clinic to address the tics and their ADD or ADHD is so out of control that they can’t even concentrate long enough to use the strategies I’m teaching them, then it’s time for me to have the conversation with parents that we first need to treat the ADD and then come back and let me work with them on the tics.

Tiffany: Okay, okay. You did mention some of the social aspects. I was watching a video. These kids sometimes are exhausted. They have a hard time getting through the day, and they can end up with depression, feeling isolated, because they have something that stands out and that a lot of other kids don’t have.

Dr. Rowe: Right.

Tiffany: So, how do you address that part, the social? Is it just by addressing the tic it ends up helping out with the social aspects?

Dr. Rowe: Oftentimes, that’s exactly what happens. Sometimes, the kid is not bothered by the tics at all, it’s all the other stuff that goes with having the tics that bothers them like being ostracized by peers or being physically exhausted, or I mentioned earlier that sometimes tics cause physical pain. The only reason that a child really wants to work on the tic is simply to get rid of the pain that it causes. The parent, on the other hand, is thinking about I don’t want my child to have A, Tourette’s Syndrome, but I also don’t want them to be bullied –

Tiffany: To be teased –

Dr. Rowe: I don’t want them to miss opportunities in life because they have Tourette’s Syndrome or Tic Disorder. If you have a child that is in school and trying to suppress their tics and all they’re thinking about all day is, please don’t let me tic.

Tiffany: Because it’s like an itch they have to scratch.

Dr. Rowe: It is, absolutely. There’s a building sensation inside the body and brain, and they feel like it just continues to build until they express the tic. If they’re trying not to do that, then obviously, they’re not focusing, they’re not listening, they’re – and not because they’re being willful or a bad kid, they just can’t. There’s only so much multitasking a child can do.

Tiffany: Okay, so you’re on the faculty at UAB, you’re teaching Occupational Therapy, how did CBIT enter the OT realm, if you will?

Dr. Rowe: That’s a good question. I got a call back in 2009, from Dr. Leon Dure who is the pediatric neurologist here at children’s. He oversees the movement disorders clinic. He called me and said, “Hey, there’s this new therapy for kids with tic disorders and Tourette’s Syndrome. Why don’t you get trained and we’ll start a program?” So I did. We contacted the Tourette Association, and they sent Dr. Doug Woods, and they trained five of us. What we found is that OTs actually are a very good fit for this work. First of all, I think because we really understand just the occupations of children and how any problem or disturbance can interfere with them participating and engaging in those occupations. But also, because we pay a lot of attention to the environment, and we do a lot of modifications as Occupational Therapists, to the environment --

Tiffany: Already?

Dr. Rowe: Exactly.

Tiffany: Right, right.

Dr. Rowe: So, it’s just kind of already in our wheelhouse of things that we do and have done. The other benefit for us is that for a Pediatric Occupational Therapist, you have years of working with these kids that have all of the underlying coexisting conditions – the ADD, the ADHD, the OCD, the anxiety, the dysgraphia, all of those things again, are not new to us. Not only are we teaching the kids how to manage their tics, but we’re also addressing all of those other issues that they have – if they have them.

Tiffany: Sure.

Dr. Rowe: And that’s very unique to our CBIT program. Not all CBIT programs do that.

Tiffany: Let’s get into the nitty-gritty of what you’re teaching these kids because it’s totally fascinating to see the results I’m sure --

Dr. Rowe: Yes.

Tiffany: From the beginning session then to eight sessions later.

Dr. Rowe: In the last, probably two years, I can count the number of kids – and I would say that it’s less than a dozen – that I’ve actually taken through the full eight sessions. They are very motivated, and I’m very lucky to have Dr. Dure as one of my primary referral systems because he does all of the triage work for me. He asks those important questions like, “Is your child bothered by their tics? Does your child even know they’re ticking?” And if the answer to those questions is yes, then they’re a great referral for me.

Tiffany: And so, you’re basically teaching them that when they feel that itch is coming on – when they feel that tic coming on, to do something else, a competing response is what it’s called?

Dr. Rowe: Exactly, that’s the terminology. That’s great. There’s that itch or that urge – it’s called a premonitory urge. That can be something very specific like I feel pressure behind my right eyeball, and maybe that’s why they blink. Or, it can be something very diffuse and vague, so, for instance, a kid that has a throat-clearing tic. Maybe they don’t feel anything in their throat, but they get sort of a sense of anxiety or butterflies in their chest, and then they do the tic. So, there’s the urge, the tic, and then you literally feel relief. Your brain and body feel a sense of relief. It's a relief that continues that cycle. If there’s any magic about the program, it’s the timing. If we can get that kid that has the premonitory urge, they know when the tic is coming, we can have them do the competing response – and I’ll go into that in just a minute – right then, as soon as they feel the urge, then basically, they’re interrupting the tic cycle. That’s the kid that literally, within 48 hours, we can exhaust a tic or minimize it to the point that they’re no longer bothered by it.

Tiffany: And I can imagine that’s such a relief for them?

Dr. Rowe: Oh, my gosh, yes.

Tiffany: They must feel a sense confidence –

Dr. Rowe: Absolutely.

Tiffany: that they can control the tic and the tic doesn’t control them. Tell us about the Tourette Association’s Center of Excellence Distinction that Children’s and UAB recently received.

Dr. Rowe: We are one of five institutions in the Southeastern Regional Center for Excellence.

Tiffany: Very good, and so what does that mean? Do we all basically use the same type of protocol to treat tic disorders or are we meeting on a regular basis?

Dr. Rowe: Well, our center, that’s exactly what it means. It lends itself nicely to studies, but also just for the collaboration of work so that we are more informed about what we’re all seeing. Basically, there are three premises for all of the Centers of Excellence that were set up by the Tourette Association, and that’s Service, Research, and Community Outreach. That’s the mission of any Center of Excellence, but the way that we all carry that out might look a little different.

Tiffany: Where can people go if they would like more information about our program or others like it?

Dr. Rowe: We have a website. It’s ChildrensAL.org/CBIT.

Tiffany: Wonderful, thank you so much.

Dr. Rowe: Thank you.

Tiffany: We appreciate you being with us, today.

Dr. Rowe: Thanks for having me.

Tiffany: Thanks for listening to Inside Pediatrics. More podcasts like this one can be found at ChildrensAL.org/InsidePediatrics.