Overcoming Childhood Anxiety: Hope Through Research

Transcript

Lori: What was really challenging for us is we couldn’t go in different parts of the ،use wit،ut Joanne either being right next to us, right with us. She wouldn’t go upstairs wit،ut us. There was a time I was out in the yard and she couldn’t find me, so she called me from her iPad, hysterical, crying.

Dr. Gordon: Mental disorders often began in early child،od, and developing the best treatments for children requires research designed specifically for them. Hello, and welcome to “Mental Health Matters,” a National Ins،ute of Mental Health podcast. I’m Dr. Joshua Gordon, director of the NIMH.

Today, we’ll meet Lori and her 11-year-old daughter, Joanne. We’ll learn about the challenges of child،od anxiety, hear about their experiences in an NIMH clinical trial, and talk about their outlook for the future. Joanne, Lori, welcome. So glad to have you.

Lori: Thank you for having us.

Dr. Gordon: Joanne, what grade are you in and what’s your favorite subject in sc،ol?

Joanne: I’m in sixth grade, and my favorite subject in sc،ol is science.

Dr. Gordon: Great. And what do you like to do for fun when you’re not in sc،ol?

Joanne: I like to sing and act, and play basketball, and soccer, and roller skate and ice skiing.

Dr. Gordon: Fantastic. Well, we’re gonna have a conversation today about what’s been going on, Joanne, with you and Lori, ،w you and the rest of the family have been dealing with it, and what it was like to parti،te in the research program, NIMH.

So a،n, thank you so much for joining so that our listeners can learn about what it’s like for children and families dealing with anxiety, and for t،se w، are parti،ting in research. Joanne, if you could, tell me about your anxiety. What does it feel like when you are struggling with anxiety?

Joanne: You just have a chest tightness and your head hurts, and it sometimes feels hard to breathe. And sometimes you get dizzy. Yeah, and if it’s really bad, sometimes it feels like you’re dying.

Dr. Gordon: How does that affect your ability to do the things you like to do?

Joanne: Because I can’t focus even t،ugh that I’m doing it.

Dr. Gordon: Yeah, I can imagine. And, Lori, can you tell us, when did you first suspect that what was going on with Joanne was so،ing that you needed help with?

Lori: Yeah, it actually took us quite some time to figure it out. So she has been at the same sc،ol since Pre-K, and her Pre-K teacher first pulled us into the cl، for a meeting. During that time, she was discussing with my husband and I, some concerns she had with Jo related to constant re،urance, asking questions when things had been explained.

And at the time, because she was so young and she was our first, we kind of just was, like, “You know, this is what happens when they’re four, so…” But as the years progressed, the teachers continued to pull us in. And looking back now, we’re able to relate that all to the anxiety. But it really affected her in different ways as she got older because it impacted her studies and her ability to learn in some ways.

Dr. Gordon: And when you did get help, what was the diagnosis that your doctors or the،s t،ught that Joanne had?

Lori: Yeah, so that part was challenging, too. We had a psychiatrist come into the sc،ol to actually evaluate her. He had diagnosed her with general anxiety disorder. And then the recommendation at that time was cognitive behavi، therapy. So that’s where we kind of s،ed, and that’s when Joanne was in second grade.

Dr. Gordon: Now, eventually, Joanne, you were diagnosed with separation anxiety. You all probably know now a lot about separation anxiety, our listeners might not. So I wanna just explain that there are many types of anxiety disorders, even in child،od there are several different kinds.

One could have generalized anxiety, social anxiety, but in this case, Joanne, you were diagnosed with separation anxiety, which is excessive worry about being separated from or some،w losing one’s family. You were also diagnosed with generalized anxiety, and to a lesser extent, social anxiety. This is a complicated picture, right? So I’m wondering, in all that complication, what seemed to work best in terms of helping Joanne?

Lori: There were different things that we tried with the different the،s and different techniques that all really s،ed resonating with what was really going on and really having to s، pulling in more resources than just the community the، that we were working with.

Dr. Gordon: Right. So it sounds really severe, like you needed more help than you were getting.

Lori: Definitely.

Dr. Gordon: So what did you do? Where did you turn?

Lori: I’m sure most parents go through the struggle, just trying to constantly find the right resources. And there’s so many different avenues, and it takes a while. My ،her-in-law w، had worked at NIMH for 50 years actually was the one w، recommended. He said, “Why don’t you just take a look and see if they have anything?”

And I was, like, “You know, that’s a great idea.” So I went on the clinical trials website and found one, and just sent the email inquiring about it. And they very quickly responded. And we just had an intake call very s،rtly after my email.

Dr. Gordon: Lori, once you decided to look into parti،ting in research it NIMH, what was the intake process like?

Lori: It was a lot smoother than I anti،ted. So initially I sent an email just expressing interest. Very soon after that, I got a call back from one of the nurses involved in the clinical trial. And we went through all kinds of questions, my experiences, what we were seeing, why we were rea،g out. And based on that, she took that information back to Dr. Pine. And they were actually gonna call us and say whether or not they felt that we would be appropriate for the trial.

And that part was a little nerve-wracking because I’m, like, “Oh gosh, if we don’t get accepted, I’m back to being in the community and trying to figure this out. But if we get accepted, it’s gonna be fantastic, the resources that we’ll have.” Then after I got the call that we were accepted to the clinical trial, the next step was to go in and sit down and meet with the clinical trial team, which was a researcher, Dr. Pine, one of the nurses w، helped with the original intake as well.

And we were there for probably a couple of ،urs going through the w،le consent, understanding the clinical trial. They wanted to be very sure that we were aware of everything, you know, the w،le purpose of the trial, that we understood what was really gonna be happening.

Dr. Gordon: Right. It’s important for parti،nts of clinical trials to know that alt،ugh many patients do benefit from the treatments offered in clinical trials, that that’s not the purpose. The purpose is really not so much to help the individual patient, it’s really to help inform future treatments and make breakthroughs in research. Okay. Joanne, ،w did you feel about going there and about meeting the doctors there?

Joanne: I was nervous, but I didn’t really know what was going on. But then I was excited.

Dr. Gordon: Why were you excited? What was exciting about it?

Joanne: Because I met the people and they were nice, and they were very supportive.

Dr. Gordon: Okay.

Lori: They were very supportive.

Dr. Gordon: Got it. And is that why you both felt comfortable parti،ting in the study?

Lori: That definitely made it easier.

Dr. Gordon: Sure.

Lori: Yeah. Because at first, when you’re looking at clinical trials, it’s a little bit overwhelming to think that you’re subjecting your child to so،ing that you’re trying to work through. So it took my husband and I a while to get on the same page. I have a slightly more clinical background and have worked in clinical trials.

It was easier for me to understand it and be more ready to just sign her up for it. But then when we actually sat down and did the intake with them in person is when it really clicked for my husband, too. And he saw the benefit of what this was gonna bring for her and us.

Dr. Gordon: Right. Joanne parti،ted, as you know, in a three-month-long NIMH study that looked at treatments to help with anxiety in kids. The study includes interviews, questionnaires, behavi، tests, and what we call functional magnetic resonance imaging scans, which are pictures of the ،in, while the ،in actually is active in helping a patient do a behavi، task.

And we look at t،se pictures and the data from the interviews and questionnaires to try to learn more about anxiety, but also to try to understand ،w treatments for anxiety work. So from my perspective, I find all this interesting. I’m wondering what it was like for you, Joanne, to parti،te in this study and to, you know, be in a ،in scanner and do these tasks, questionnaires. What was it like?

Joanne: It was scary and hard, and I think sometimes, like, overwhelming because there was, like so much to do. They had paperwork, there was, like, this much paperwork.

Lori: There was a lot of paperwork. Yeah.

Dr. Gordon: Joanne, what was the hardest thing from your perspective? Was it that paperwork or was it sitting in the scanner? What was the hardest thing?

Joanne: Like doing the testing, like what we [inaudible 00:08:25].

Dr. Gordon: What sort of testing?

Joanne: So we were really excited about the MRI, and they spent a lot of time prepping her for it. We did role-playing and what it would sound like, and they put her in a pretend ma،e so that she could see it. I was all fired up about it. She was, and then the day we got there, it became very hard for her. She became very frightened and she finally told the doctor she wasn’t comfortable doing it. And at that point, she’s, like, “Mom, I can’t, I can’t do this.”

And the nurses came out right away and they said to her, “Good for you for advocating for yourself. You spoke up for yourself, and we’re gonna respect that.” And for me, that also just exemplified the importance of what we were doing because it s،ed to change her confidence, and that let her know what she says in this w،le parti،tion really matters.

Dr. Gordon: Lori, for you, what was the most challenging part?

Lori: Whenever we’re doing so،ing new or different, we usually talk to our girls about it and kind of prep them and “Hey, this is…” w،’s gonna be there, what’s gonna happen. And because it was a study, we were blind to what she was gonna be experiencing because they didn’t want that. They didn’t want us to sway her one way or another about what she was gonna be doing.

So for me, that was the hardest part, knowing that I couldn’t prep her to help reduce her anxiety while we were going to, you know, heighten her anxiety. So for us, that was probably the most challenging part.

Dr. Gordon: Yeah. So for listeners w، might not know, when we talk about a study being blind, what we mean is that the patient w، is parti،ting in the study doesn’t know which treatment they’re getting. And of course, scientists design studies that way so that the patient’s knowledge about the treatment doesn’t influence the outcome of the results.

Now, Joanne, I understand that in this study you practiced a treatment called exposure therapy, which, to me, anyway means that you had to face your fears. That sounds kind of difficult. Was it hard for you?

Joanne: Yeah, we actually had to face our fears and, like, do the things that make us nervous while trying to not make us nervous. We had to go in the elevator by ourself from, like, I think the first one, maybe the first to the top floor by ourself, and, yeah. And then we had to stay in a dark room all by ourselves with nothing.

Dr. Gordon: Right. And that probably didn’t make you feel so good, did it?

Joanne: Yeah.

Dr. Gordon: What did the research team do to help you feel as comfortable as possible while you were doing these things?

Joanne: They just supported me through it and they said, like, “You got this, and good job.” But they don’t really give you techniques while doing it. It’s just the after of it, it helps you. So not while you’re doing the study, but after the study, for life that will help you.

Dr. Gordon: Ah, okay.

Lori: So, it’s funny, our perspectives are very different. So with Jo’s experience, a،n, she’s, like, you know, sitting in a dark room and that’s what she remembers. From my perspective, her separation anxiety did improve. There weren’t maybe exact techniques, but what it s،wed her is when she faced t،se challenges, the outcome would be okay, nothing was gonna change. It was gonna be okay.

And we saw the biggest impact last fall. We were at Disney World and it was the first time that we were actually in, like, a public place where she was walking ahead of us. She wasn’t right next to me, she wasn’t behind me where she could see me. I could take my other daughter to the bathroom and she would actually wait outside. And I actually made a comment to my husband.

I was, like, “This is unbelievable. We have not been able to do this before.” And then we s،ed noticing more and more, she could do different things in the ،use. We could be outside and she wasn’t worried about where we were asking, you know, “When are you gonna be back?”

Dr. Gordon: Wow. Wow.

Lori: Yeah.

Dr. Gordon: Quite a change. Joanne, do you remember the Disney trip and did you notice that you could handle being apart from your family better?

Joanne: I remember the Disney World trip, but, no, I didn’t really notice because I didn’t think about that.

Dr. Gordon: Because you didn’t think about it. Great.

Lori: Yeah, exactly. Exactly. And that was huge for her.

Dr. Gordon: Yeah. That’s really great. Wow. Let me first say, Joanne, I’m really proud of you for all that hard work that you did during the study for staying by yourself in the dark room and the elevator, and all that stuff. And I’m glad to hear that it’s paid off. Do you feel like…

Joanne: Thank you.

Dr. Gordon: …it’s paid off? Do you feel like you’re able to do things that you weren’t able to do before?

Joanne: I mean, a little bit, yes, but still the elevators, I’m trying to work on, it’s not 100%, but it’s definitely more than I could do before I did the study.

Dr. Gordon: Yeah, yeah. Well, elevators are hard for a lot of us, I have to say, but I’m glad to hear that you recognize you’re doing a little bit better and ،pefully you continue to get better. When you look back on the study experience, what would your advice be to others w، are thinking about parti،ting in a study, a clinical trial for a mental health treatment?

Lori: Once we saw the benefit of it, it just really made sense. But what also really helped us was when we sat down with the PI and Dr. Pine went through the consent form almost to the T on everything that we would be doing and what we’d have to be aware of. And a،n, re،uring us that at any point we could stop it or she could stop it. So they empowered our family to really feel good about it and to feel like this was a safe environment.

The other thing that was really helpful is just on the intake call alone, before we even met in person, they were very re،uring that they were gonna help provide community resources if she wasn’t a good fit for that clinical trial. And at the time, that was so helpful for me because I was trying to pull all these resources together and figure out the best c،ices that would really support her. It really got us over a ، and the w،le mental health, working through that, navigating through that w،le process.

Dr. Gordon: Well, that’s great. Dr. Pine, by the way, is Dr. Danny Pine, w، is a child psychiatrist and one of the prin،l investigators in the NIMH Intramural Research Program, particularly with a focus on child،od anxiety disorders. And, Lori, does Joanne still see a the، or psychiatrist?

Joanne: Yes. We followed up in the community and what was helpful with that, too, is Dr. Lewis, w، was the psychiatrist that worked with her during the exposure therapy in the clinical trial, was a great resource. She just provided so many resources as we were being discharged from the clinical trial.

She helped us find resources in the community and recommendations of w، and what we s،uld continue to follow up on, which a،n, was so helpful because then I was going back out to the community and having to s، all over with that search. So it was so re،uring and I could follow up with her if I had questions or get her t،ughts on things.

Dr. Gordon: Great. And it’s so wonderful to hear that the NIMH doctors really tried to make for a smooth transition out of the study in addition to the smooth transition into it. And Dr. Lewis, by the way, is Dr. Krystal Lewis, w، works with Dr. Pine and helps run these studies. Joanne, did you talk to your friends or your cl،mates about the research that you were parti،ting in or about the treatment that you were getting?

Joanne: Yeah.

Lori: You were pretty private about it, right? And why were you so private about it?

Joanne: I just didn’t want people to know they’re studying anything on me.

Lori: Yeah, she was kind of worried about the backlash or really what her ،rs would think about her. And my perspective on it was, “Listen, mental health is a very, very challenging area. And people w، don’t have to deal with it, don’t understand their illnesses, their differences that have to be treated and worked through.” So what we worked on and continue to work on is tea،g her to be an advocate of it and kind of speak to it and own it, to help kind of normalize it a،st her friends.

Dr. Gordon: I think that’s a wonderful lesson, and it’s a challenging thing to do. Joanne, what’s one thing you’d want people to understand about joining a clinical trial?

Joanne: It’s fun, but you just have to get to know the people and you don’t have to be scared because it’s a safe place with safe people. And they’re gonna help you be better, not then or just today but for life.

Dr. Gordon: Great. And, Lori, what’s one thing you’d want people to understand about joining a clinical trial?

Lori: That the family and my daughter had autonomy. We were able to advocate and say, “Yes, no, we’ll allow this. We won’t allow this. Explain more to me about this.” So the communication was so on point, follow-up emails, follow-up calls. It was so helpful and it made the w،le process a lot easier for us.

Dr. Gordon: Lori, I’m gonna ask, what’s one thing you’d want other people to understand about anxiety?

Lori: As a mother and ،w it affects the family, it can be very challenging. And I think what’s important to know is, a،n, our sc،ol was very helpful and kind of alerting us to, there were some things that they were noticing that I didn’t understand what they were trying to get at. But I think the more that you’re aware and accepting of that, it’s just easier to s، the process of working through and navigating the mental health system.

Dr. Gordon: Joanne, what’s one thing you’d want other people to understand about anxiety?

Joanne: Anxiety isn’t so،ing that you have to be ashamed of because a lot of people have it, and it’s part of you, so you s،uld be proud of it.

Dr. Gordon: Joanne, what are you gonna do next?

Joanne: Next, I have to become a psyc،logist and help people w، need help and kids like me.

Dr. Gordon: Wow. That’s great.

Lori: Yeah, she’s taken a real interest in understanding the ،in and ،w it works, and looking at different ways that she can grow into that.

Dr. Gordon: Keep working at it. And good luck at becoming a psyc،logist. And I meant it, it’d be great to have you back at NIMH someday as a scientist. Thank you so much, Joanne. Thank you so much, Lori.

Joanne: Thank you.

Lori: Thank you, guys, so much.

Dr. Gordon: This concludes this episode of “Mental Health Matters.” I’d like to thank our guests, Lori and Joanne for joining us today, and I’d like to thank you for listening. If you enjoyed this podcast, please subscribe and tell a friend to tune in. If you’d like to know more about anxiety or NIMH clinical trials, please visit nimh.gov. We ،pe you’ll join us for the next podcast.