Childhood OCD

Nine-year-old Cora from Birmingham has always seemed a little anxious, but this did not impact her daily life much at all. However, she has recently started to take longer and longer to get ready for school in the morning. Her parents notice that she will start to get out of bed but will immediately get back under the covers, sometimes repeating the process twenty times! When they ask her about it, she says she has to think about something happy while she is getting out of bed, or a robber may break into the house and harm her family. These repetitions have extended to multiple other behaviors, with Cora asking her family to repeat their activities until she has the “right” thought while they are doing it. Cora becomes very angry at her younger brother, Leo, as he often refuses to walk through doors repeatedly when she asks. Her parents alternate between yelling at her due to her delays in doing activities and trying to accommodate her requests. Their own parents tell them that they should just force her to get out of bed, get in the car, etc. as they are the parents and in charge. Cora is also struggling at school due to her need to rewrite assignments if she was not thinking a good thought. Homework is likewise taking hours every night, with the whole family ending up in tears. Cora’s parents took her to a counselor to address anxiety; however, they spent a lot of time talking about her obsessions, which unfortunately only seemed to make things worse. When Cora’s parents bring her to child psychologist who specializes in OCD, they are at their wit’s end.

Who gets OCD in childhood?

OCD can first appear at any age, but individuals seem to get symptoms most commonly at either ages 7-12 or in the late teens/young adult years. Research shows us that individuals who develop OCD in childhood are more likely to have a family history of OCD or similar disorders. Additionally, childhood OCD often doesn’t come alone—it tends to show up with other disorders like depression, anxiety, tic disorders, ADHD, and Autism Spectrum Disorders. Further, because there is significant overlap among symptoms, children may be misdiagnosed.  

OCD in childhood can be challenging to diagnose, as children often struggle to articulate their obsessive thoughts. Families are often best able to view behaviors, such as repeated handwashing or other decontamination efforts, lengthy bedtime rituals, or significant struggles with getting out of the house due to rituals. 

How can you tell the difference between normal childhood behavior and OCD? The main distinguishing feature is time devoted to rituals, as well as distress if they are prevented. We’ve heard many parents joke that there is no one thirstier than a child who has just been put to bed. However, if bedtime is dragging on for hours, and the child is extremely distressed by efforts to change their preferred behaviors, it may be more than normal bedtime stalling.

School Struggles

The International OCD Foundation offers an excellent checklist to help children identify potential symptoms and impacts at school. Accommodations at school are appropriate for OCD, and Upward is happy to help with the documentation needed for this. Many families and teachers may wonder if accommodations will maintain OCD symptoms. Over the long-term, they absolutely can, but they can be immensely helpful for reducing distress while engaging in treatment. Treating providers can also collaborate with teachers to gradually reduce accommodations in the classroom, and children and families may appreciate having them in place, while also having a goal of eventual reduction. Huntsville 3rd grader Kelsey’s family sought school accommodations, as homework was taking hours each night due to her repeated need for repeated assurance and checking that she had not accidentally written a curse word on her paper. After a course of Exposure and Response Prevention for OCD, she continues to have accommodations in place for 4th grade but has not needed to use them.

As many as 40% of individuals with OCD may experience a delayed sleep phase, and this may be especially pronounced in adolescents. Thus, delayed school start times may be beneficial when possible in order to maximize sleep for adolescents with OCD. Working with treating providers such as Upward psychologists who have specialty training in both OCD and sleep disorders can also be helpful to improve school functioning.

Family Impact

Childhood OCD often has a pronounced impact on the whole family. In some cases, parents realize that they too struggled with these symptoms but were told to just “suck it up” as children. Therapies like SPACE  (Supportive Parenting of Anxious Childhood Emotions) can be immensely helpful for reducing family accommodation and improving childhood OCD symptoms. Siblings are often significantly affected by OCD, as they may be asked not to invite friends over, to prepare meals, etc. because of their sibling’s symptoms. Education for the whole family can be helpful to focus on battling OCD, not your loved one. The International OCD Foundation provides helpful articles for families as well as virtual and in-person conferences to learn more about OCD and connect with other families who are dealing with OCD.

What about PANS/PANDAS?

Justin and Jennifer from Nashville feel like their 10-year-old son Lucas has been replaced by a different child. Lucas recently went on a two-night fifth-grade field trip as his usual relaxed, easygoing self, but since his return, he has been spending hours washing his hands and disinfecting his room with Clorox wipes. He is also intensely fearful of being left alone and insists that his parents remain in his room while he falls asleep. He even asks that his parents sit in the bathroom while he showers, and he sits directly outside the bathroom door while they are inside. His parents asked several times if anything happened on the trip to upset him, but he says he had a great time. He appears happy in all pictures from the field trip, and his teachers and chaperones say he participated well and seemed to enjoy the trip. He developed strep throat about 5 days after his return and was treated with antibiotics.  Lucas may be exhibiting something called Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus (PANDAS). Children with this disorder suddenly demonstrate symptoms of OCD, as well as other symptoms like a reduction in eating, frequent urination and/or bedwetting, severe separation anxiety, screaming for hours, and tic behaviors. Further research has indicated that similar symptoms can occur in response to a variety of infections, such as Pediatric Acute-Onset Neuropsychiatric Syndrome (PANS). Unlike pediatric OCD, PANS/PANDAS typically comes on very suddenly and dramatically. Typical onset is between 4 and 14 years old, although timing can vary. Children may be vulnerable to future cases of PANS/PANDAS throughout their lives and should be mindful of symptoms following infection.

Best practice for treatment of PANS/PANDAS involves a multi-pronged approach of behavioral treatment, treatment of the infectious disease, and treatment of autoimmune reactions. This helpful fact sheet can be useful to share with your child’s pediatrician if you suspect PANS/PANDAS. Upward is happy to provide gold-standard behavioral treatment for PANS/PANDAS and to consult with treating medical providers as well.

Hope for Recovery

ERP and SPACE both offer significant hope for improvement in OCD symptoms. What might treatment look like? Both medication and therapy can often be helpful for recovery. Therapy focuses on gradually reducing rituals that children use to relieve their obsessions. The therapist will help make a ladder of things that are challenging and work on gradually climbing the ladder until they are able to do even the toughest things on the list. For example, Joey in Montgomery worked with his therapist to make a limited number of “reassurance cards” that he could use each day. If he wanted to ask his parents for reassurance that he had not harmed anyone, he could turn in a card. Once his cards were used up for the day, they would provide no further reassurance. Children with OCD also benefit a lot from the strategies of “stretch it,” “switch it” or “silly it.” To stretch, Joey’s parents might tell him they will offer reassurance but not for 10 minutes. They then work with the therapist to increase this time each week. To switch it, they might provide reassurance about something other than his original question. Children often especially like the “silly it” strategy. Joey’s parents might reassure him that he hasn’t harmed anyone but only in Pig Latin. Since living with OCD can be challenging for children and families, finding support from other families can be immensely helpful. The International OCD Foundation offers numerous support groups, as well as educational programming and annual conferences. 

Upward is excited to share that not only have our clients receiving OCD treatment significantly reduced their symptoms, their families also report significant reductions in family accommodation and improvement in functioning. Upward is uniquely positioned to conduct comprehensive evaluation of childhood symptoms and recommend and implement gold-standard treatments for OCD and similar disorders.