Obsessive Compulsive Disorder: What Parents Need to Know

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OCD is more common than people think; it affects about 1 out of every 200 children and teenagers which means there are about 500,000 young people dealing with OCD.

Almost all kids have certain things that have to be “just right”, rituals that make them feel comfortable and safe, such as being tucked in before going to sleep every night.  For some kids, however, the need to have things “just right” or to engage in specific rituals can take over their lives, and the lives of their families. Part of my job as a psychologist for the past 15 years at Riley Hospital for Children at IU Health and co-chief of the Tics, Anxiety and Compulsions Clinic (TAC Clinic), involves helping families figure out whether these behaviors are normal, or if a child is experiencing symptoms of Obsessive Compulsive Disorder (OCD).

OCD is more common than people think; it affects about 1 out of every 200 children and teenagers which means there are about 500,000 young people dealing with OCD. The average age OCD appears is around 9 or 10 years of age, but many kids aren’t diagnosed and don’t start treatment until they reach adulthood. 

Most people associate the term OCD with being extremely orderly. While behavior like this can be a part of OCD for some children, the condition can take many forms. Two key features of OCD are obsessive thoughts and compulsive behaviors. 

Obsessive thoughts can be vague such as “I need to be sure my shoelaces are even; if they aren’t right, I won’t feel right”, or can involve more specific fears such as, “If I don’t check with Mom to make sure I packed everything I need for school, and if she doesn’t respond in the right way, I’ll forget something, and be in trouble.”

Compulsions are behaviors that an individual performs to try to decrease the anxiety from the obsessive thoughts.  For example, a child might repeatedly re-tie their shoes for 30 minutes trying to get them “just right” and then spend another 30 minutes repeatedly asking Mom if they’ve packed everything they need for school. If the child is prevented from re-tying their shoes, or if Mom says she’s already answered the question, the child becomes extremely distressed. A child’s obsessions and compulsions can interfere with things like going to school, having fun with family and friends, and getting a good night’s sleep.

Parents often ask why their child developed OCD. Genetics seem to play a major role. OCD runs in families, and the risk of OCD also goes up if anyone in the family has Tourette Disorder or another tic disorder.  Sometimes, but certainly not always, the start of OCD can be triggered by a stressful event, such as the death of a loved one, which might lead a child to develop an obsessive fear of something bad happening to another loved one, and compulsive behaviors, such as having parents repeat a phrase such as “I promise to stay healthy.”

The good news: OCD can be treated. Exposure and Response Prevention therapy (ERP) works well to help children manage their symptoms of OCD. To find a provider who is skilled in ERP, parents can start by asking their primary care physician if they can provide a referral, or can call their insurance company to find out which licensed mental health providers are in network; they can then call providers to find out if they use ERP. Parents can also consult the website International OCD Foundation.   

ERP involves helping the child and parents learn that OCD involves a “glitch” in the parts of the brain that help us decide whether we can let go of a thought or fear, or if we need to hang onto it and try to do something about it.  This “glitch” makes people hold on to thoughts and fears that those without OCD would be able to just let go. It can make people feel just as scared as they would if they were being chased by a dangerous animal, even though they are perfectly safe.  

How we help: We make a list of the “glitches” and the things OCD tells the child to do to make the fear go away. For example, “It’s time to eat lunch, but my OCD tells me that my food might be spoiled and make me sick, so I need to have someone else check it by taking a bite first.” We put the list of glitches in order, from easiest to hardest. Starting with the easiest item on the list, the child is coached through bravely not giving the OCD what it wants. We talk about how OCD is kind of like a little child, and will react to not getting its way by getting loud, before eventually quieting down. For the child having trouble eating their lunch, we might start with a bite of a food that can’t really spoil, like a cracker.  

Once the OCD stops reacting to that first list item, we move on to the next item. This is how we re-program OCD glitches one step at a time. Most kids can work through the first glitch on their list in a few weeks, which usually helps kids and their parents feel more confident that they can take control of OCD. If treatment is going well, we expect OCD to be giving kids much less trouble within 3 to 6 months.

If ERP isn’t available, or if the OCD isn’t getting better with ERP alone, medications, prescribed by a primary care physician or child psychiatrist, can also help.

--  By Ann Lagges, Ph.D. HSPP

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