Childhood OCD, Successful Treatment for the Intractable Condition

Cognitive Behavioral Therapy (CBT) and medication management are empowering people in their personal battles against a tough foe, Obsessive-Compulsive Disorder (OCD).

What Is It Like To Have OCD?

A patient of mine observed that the challenges of Covid-19 helped him explain how it feels to have OCD. Remember how you felt when someone near you coughed loudly in the early days of the pandemic.

Your mind probably flashed to the possibility that you and your loved ones were at risk from the virus. The harm alarm system of your brain, the amygdala, was calling out a warning.

You likely have felt these anxieties in brief moments, but now imagine if your brain was very often perceiving imminent danger. For people with OCD, these thoughts are often on perpetual rewind, with neurological research indicating parts of the brain, such as the anterior cingulate cortex, locked into a struggle to reconcile actual and perceived risk.

The relentlessness of the thoughts can really wear you down. When you are trying to concentrate in class, for example, OCD is stealing your attentional bandwidth by forcing you to think about something threatening.

OCD also invades moments of your life that should be peaceful and enjoyable, such as sitting down to a good meal. Your amygdala shoots you an ominous “what if” warning about the dark speck on your dinner meal, and you decide it would be better not to eat.

In mainstream media, people have come to equate OCD with fears of disease and contamination. The truth is, however, that threatening OCD thoughts can come at a person from many different angles. Among the most pernicious are thoughts that a person regards as horrendous or appalling.

A highly religious teen finds his mind wandered to what he regards as a taboo sexual, for example. He is seized by anxiety around thoughts such as “does the fact I thought this mean I want it to happen?”

In the face of these relentless attacks, OCD often presents a person with a kind of blackmail. A way to cope with the fear will be to spend a lot of time performing some kind of action, such as engating in very precise movements, cleaning, checking, or counting in a specific manner. These behaviors, associated with areas such as the prefrontal cortex, are scripts we have learned through repetition to reinforce a sense of safety/correctness or, in the case of OCD, what can feel like the only way to reduce anxiety.

Your ritualized behavior might be thematically linked to a specific stressor, such as feeling the need to hold your breath when you hear that cough. Other times you feel a tension that compels you to do something out of the ordinary, even if there is no clear association between a specific fear and a protective action. You won’t be able to calm yourself down to sleep at night, for example, unless you turn light switches on and off a certain number of times. Sometimes the rituals are demanding, but highly variable, such as feeling the need to repeat a movement until it finally feels complete.

The problem is that the more often you do these things, the more you will feel you need to do them. Rituals are the only thing providing you relief from your emotional pain. It is very hard to stop.

Clinicians used to consider obsessive compulsive disorder to be an intractable condition. Painful, life-long, incurable.

Enter CBT

As the name suggests, Cognitive-Behavioral Therapy focuses on thoughts and actions; in the case of OCD, disputing alarming thinking and taking actions to substantiate that it is safe, even good, to defy obsessive fears. CBT is forward-leaning and designed to build confidence. People become their own best therapist, knowing when they are stuck, why it is happening, and how to get unstuck.

I am a big fan of the excellent work by John March and Karen Mulle on helping children to overcome obsessive thinking and actions. Following their recommendations when working with young kids, we often start by drawing an analogy between anxiety and an imaginary bully who is sitting on the child’s shoulder.

This OCD bully is mean. He whispers to the child that bad things will happen if his rules aren’t followed exactly, tries to make her feel embarrassed, and, like bullies everywhere, is a tricky liar.

So, how do we overcome this bully? First we work on building a sense of pride in “bossing back” OCD by exposing falsehoods. We carefully examine the obsessive fears one at a time. It is hard to do complex work in your head, such as a math problem, but slowing down and examining the anxiety linkages on paper facilitates valuable “ah ha” moments.

In terms of the details of reframing, depending on the age of the child we might talk of dropping a “smart bomb” on the worry thought by being scientific about what is true and not true. To accomplish this, we collect a lot of data. A middle school student whose hands are red and raw from over-washing due to contamination fears, for example, might learn about immune functioning. We might investigate how your immune system strengthens when it is challenged by germs, as also happens when you take a vaccine.

When they reach adolescence, I encounter more patients who are preoccupied by taboo subjects. An adolescent boy can’t hug his mother anymore because he fears doing so could be a sexual action, for example. He would do anything to free himself from that upsetting thought, but the more he tries to force the thought out of his consciousness, the more it bothers him.

Mayo Clinic’s Craig Sawchuk, PhD, has critical insights on helping patients overcome these taboo-related obsessive thoughts. Following Craig’s guidance, we discuss that the brain doesn’t accept the admonition: “something is really bothering you, force yourself to stop thinking about it.” Instead, there is a gravitational pull to the bothersome topic. So we make it OK to talk a lot about the taboo fear, even though this can be very uncomfortable at first.

Even the nicest people on the planet will think an infinite array of thoughts during their lives, from altruistic to murderous. What happens in the OCD brain is that a person is so upset about a thought that it becomes lodged in replay mode. The fact it is so upsetting shows it is an “ego-dystonic” thought, meaning it is the opposite of what a person really wants. Real sadists aren’t upset about the idea of hurting people, for example.

Once they have practical methods to scrutinize their obsessive thoughts, my child and adolescent patients with OCD are often remarkably insightful. This isn’t surprising, as David Barlow noted in his seminal textbook, Anxiety and Its Disorders, there is a relationship between anxiety and intellect.

He quotes Liddell (1949) as follows: “Sherrington once said that posture accompanies movement as a shadow. I have come to believe that anxiety accompanies intellectual activity as its shadow and that the more we know of the nature of anxiety, the more we will know of intellect.”

Medication Treatment and the Noisy Neighbors

I sat down with my colleague and collaborator, psychiatrist Burt Copeland, MD, PhD, to get his insights about what he would want to share about medication treatment for OCD. We reflected that both of us have found it useful to think about extended metaphors that make sense to children and adolescents when trying to demystify OCD and its treatments.

This led him to a metaphor that helps explain the role of medicines. He noted that having OCD feels like living next door to a very noisy neighbor. Hearing loud sounds from next door, yelling for example, you don’t know if you should be alarmed and go check what is happening.

What medicines do, Burt noted, is not to shut up the neighbors, but instead to turn the volume down. Depending on dosage and timing, maybe you don’t hear them much at all from 10’oclock in the morning to late afternoon. Having the neighbors be less loud can help you to better decide when to ignore them or, if you initially feel alarmed, to consider known data regarding their long-standing annoying behavior.

Which medicine to pick is an evolving science. Thankfully there are medicines to choose from that are not addictive, have few side effects, and do not change your personality (which is a common concern).

Parents should ask any and all questions about potential side effects of taking any medication. Burt keeps a close eye on side effects, even subtle ones that could go missed. For example, having it feel “easier to let go of things” could help you to be less bothered by OCD thoughts, but might also mean you are less bothered by expectations of doing your homework. In considering potential [usually small] side effects, it is also important to consider that untreated anxiety or depression itself can have significant neurodevelopmental consequences.

The Bravery Piece

The most important means to overcome OCD is exposure. In essence, when the worry bully says you can’t do something, you show him he is dead wrong. Burt and I agree that medications and CBT cognitive reframing are tools to get us to this most vital part of the program, exposure.

Again, kids often are aided in their understanding by salient metaphors. Here are three activity metaphors to help explain exposure: the ladder climber, the weightlifter, and the cold-water swimmer.

First the ladder climber. To start working on exposure we co-create a hierarchy of feared situations. These might be listed numerically, as in 1 = no problem, 5 = I might be able to do it, but I’m not sure, to 10 = extremely tough. We gradually work from low to high on the ladder, and celebrate success with every rung of the climb.

Like a weightlifter, we need to have enough weight on the bar to build muscle, but not so much that it feels too painful and unsuccessful. This hierarchy will be different for every person. For some people it may be about touching things that feel contaminated, for others it may be chipping away at “just right” rituals, such as turning light switches on and off. The key thing, just like weight lifting, is that we need to get a lot of reps to make progress.

In time what happens is that people habituate to the anxiety. Like when you jump into a cold lake, at first it feels really cold. But if you stay in the water, it starts to feel warmer. The lake didn’t actually become warmer, of course. Instead, you habituated to the discomfort.

We need to build a strong alliance with the child to help them to put their foot in the water. As we know, if someone is forcibly pushed off a diving board, they are going to be extremely irritated. But if we help them to build the skill and confidence through a lot of repetition (staring in the shallow water, eventually jumping into deeper water, and finally going off the diving board), the child is going to feel both good and proud.

Picking a goal at the right level of difficulty is important. For example, there is research unrelated to OCD showing that if a child chooses to jump off a diving board and does it, their anxiety is usually cut in half. If they plan to just get up on the diving board and look around, with the intention of walking back down, they usually are slightly less anxious. If, however, they go up on the diving board with the plan to jump, get really anxious, and then come down, their anxiety usually doubles. So taking on a challenge is good, but carefully finding a manageable challenge is important for anxiety to decline.

If setbacks occur, we treat them like roadbumps. They just give us information about what to try next, chipping away at the worry bully’s power base. We conduct behavioral experiments together, building momentum, while trying to avoid undue pressure: “I wonder what would happen if you did ____.”

The focus is to keep trying. As Wayne Gretzky noted, you never score a goal you don’t shoot. Over time, the child moves more and more situations into their “win” column.

And It Usually Works

Research on the effectiveness of modern OCD treatment is very encouraging. The formerly “intractable” condition is most often treatable.

I read a big pile of research papers on the effectiveness of pediatric OCD treatments while writing a chapter with psychologist Bruce Masek, PhD, for the medical textbook Comprehensive Pediatrics. The good news: children and adolescents who complete CBT report a robust 50% to 80% reduction in symptoms. This improvement is durable over the course of years, with studies finding 79% of participants were improved or much improved at 1 to 6 years after completing CBT.

It is important to note that even with successful therapy, patients often needed “booster” sessions at some later point in their lives. For example, a teen patient affected by contamination-related fears might have initial trouble when they transition to dorm life in college.

Medication treatments lead to a 30% to 40% reduction in OCD symptoms. For people with severe OCD, medications may help them lower their anxiety enough to participate in the more challenging aspects of CBT.

While these results are very encouraging, there are occasions when treatment is ineffective. A child’s OCD might be particularly severe. OCD might be compounded by other concerns, such as ADHD, depression, or a developmental disability. Some children are overwhelmed by the idea of doing exposure work. Treatment might be too hard to access, or too expensive given the limitations of insurance.

Thankfully, there are resources to find help, such as the International OCD find a therapist service. Research suggests that even for those who don’t complete CBT, a great many still benefit. We are making progress on parity of insurance support for physical and mental health concerns, although the battle needs to continue.

Pediatric Anxiety Program

Over the past decade, Burt and I have collaborated in an outpatient pediatric anxiety disorders program in the Department of Psychiatry, Dean Clinic/SSM Health, in Madison, WI. We have a back-to-back intake model, in which I see our families first and then Burt sees them immediately afterward for consultation on topics such as medical factors relevant to anxiety and possible medication treatments.

We see a lot of kiddos with OCD, but also other significant pediatric anxiety concerns, such as panic disorder, situational phobias, separation anxiety, performance anxiety (e.g., in sports and test-taking), and selective mutism. When needed, we also work with outside anxiety programs, such as the excellent inpatient and intensive outpatient programs at Roger Behavioral Health.

In Gratitude

In my career as a psychologist, which included eight years of active duty in the United States Air Force, I have seen a lot of brave people overcome daunting challenges. Among the bravest people I have known are those confronting OCD. It is hard for me to adequately express my admiration for my clients who are working to overcome OCD. Words like “determined, smart, and resourceful'' don't begin to do them justice. It is truly an honor to be called their psychologist.

I am also grateful to have received training in CBT from a master clinician and researcher, Bruce Masek, PhD. Bruce was formerly the Clinical Director of Child and Adolescent Psychiatry, Massachusetts General Hospital.

Lastly, at the risk of embarrassing him, let me tell you more about Burt Copeland. Along with his more than full-time clinical work in the Dean/SSM Department of Psychiatry, he teaches at the University of Wisconsin–Madison Medical School, and is the State of Wisconsin expert consultant on best practices for pediatric psychopharmacological treatment. He was mentored by leaders in the field of OCD research, such as Hugh Johnson, who was also instrumental in training Duke University psychiatrist John March. Burt revels in building complex things in his limited spare time, such as sports cars, meticulous fishing lures, and watches. He is also a delightful human being.

Thanks for reading about helping kids to overcome anxiety.

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To Your Health and Happiness,

Dan Gustafson

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