Atypical Symptoms in Pediatric OCD

stressful reading

In over ten years as an advocate for OCD awareness, I have seen little improvement in the understanding of what OCD really is. While it can be annoying when the general public doesn’t “get it,” it can be downright dangerous when the lack of understanding comes from healthcare professionals.

We tell parents of children with OCD to connect with OCD specialists (of which there is a shortage, but that’s for another post), but first they need to know that their children have OCD.

It shouldn’t be that difficult to get diagnosed, should it? Typically, clinicians who want to rate the severity of obsessive and compulsive symptoms in children and adolescents use the Children’s Yale Brown Obsessive Scale (CY-BOCS) checklist. This tool can be extremely helpful for clinicians, especially in diagnosing more “straightforward” cases of OCD. Still, many cases of childhood OCD continue to be undiagnosed or misdiagnosed.

In a July 2018 article published in Comprehensive Psychiatry titled “Atypical symptom presentations in children and adolescents with obsessive compulsive disorder,” the authors detail two distinct types of atypical OCD symptoms found in 24 children and adolescents. They explained how these symptoms are part of a larger clinical picture, not a feature of an alternate condition such as psychosis or autism spectrum disorder, as sometimes thought. As explained here:

Twelve of the children had obsessions rooted in a primary sensory experience (such as auditory, olfactory, or tactile) that they found intolerable and which was sometimes linked to specific people or objects. To soothe or avoid the associated sensory discomfort, patients were driven to engage in time-consuming repeated behaviors. Many of these patients struggled with ordinary activities such as eating or wearing clothing and can be at risk of seeming to exhibit symptoms of autism spectrum disorder, especially when the patient has a level of self-awareness that leads them to conceal the obsession behind the behaviors.

The other 12 children had obsessions rooted in people, times, or places they viewed as disgusting, abhorrent, or horrific, and which led to contamination fears connected to any actions or thoughts they saw as related to these obsessions. These kinds of contamination obsessions could result in concrete contamination concerns but more often resulted in abstract, magical-thinking fears of specific, highly ego-dystonic states of being. When the fear was a reaction to a particular individual or individuals, the obsession most often resulted in avoidance behaviors designed to placate a fear of acquiring a characteristic or trait of the individual by contagion. Patients exhibiting these symptom presentations are at risk of being diagnosed with psychosis.

In a different case study a ten-year-old boy was misdiagnosed with schizophrenia and put on an atypical antipsychotic, which only exacerbated his OCD. What I find particularly heartbreaking about cases such as this one is the fact that atypical antipsychotics (in this case aripiprazole) have been known to exacerbate the symptoms of OCD. How many children are misdiagnosed and never receive a correct diagnosis?

Obsessive-compulsive disorder is complicated and I have connected with a number of people whose family members (or they themselves) have been misdiagnosed with autism spectrum disorder, schizophrenia, and even Bipolar Disorder. As we see, these misdiagnoses can have devastating effects on the person with OCD, not only because proper treatment is delayed, but because therapies used for other disorders can make OCD worse.

Health care professionals need to be better educated about OCD, so at the very least, it will be on their “radar screen” when evaluating patients. Obsessive-compulsive disorder has the potential to destroy lives, but it is also very treatable – once you know you have it.

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12 Responses to Atypical Symptoms in Pediatric OCD

  1. i know a person studying to be a nurse who thinks she has ocd because she is a perfectionist. Obviously they’ve not studied brain disorders.

    • Anthony says:

      That’s a shame. OCD is very debilitating and must be taken seriously.

      • yeah, i said i had ocd (meaning i had contamination ocd really badly and worked very hard to mostly get rid of it and it took years) but i didn’t contradict her. I just let it go. ocd has the same double language that depression had. and maybe still does. I don’t have the energy to ‘fight’ for my illness as a serious thing. It seems to be personal fo r her to have all these different illnesses (ocd, add, perfectionism,) so she can blame her problems or bad behavior on them.

    • Karin, I think your comment just confirms what we already know……….that health care professionals at all levels are not properly educated when it comes to OCD and other brain disorders.Thanks for sharing!

      • Craig Kendziorski says:

        Janet,
        How is your son doing? Have their been any changes in his treatment the last several years?
        Thanks,

      • Hi Craig, I don’t know if you’ve read my book but it chronicles my son’s treatment up until 2012. I’m so grateful to report that, since then, he continues to do well and is living a full life. He does not take any medication (it was never helpful for him though I do know it is helpful to many people) and his OCD has remained mild. He is living proof that even those with severe OCD can overcome it!

      • Craig Kendziorski says:

        Janet,
        Many thanks for your quick response. I have two children with significant to severe OCD/Anxiety (late High School and College). Medicine (SSRIs) were beneficial at first but lost effectiveness. Every few months we have had to increase the dosage and the meds became ineffective near the upper dosages.

      • Hi Craig, Are your children also engaged in exposure and response prevention (ERP) therapy which is the gold standard treatment for OCD? That is what is needed to recover and learn to live with the disorder. Medication only helps so much, even for people who benefit from it.

  2. Craig Kendziorski says:

    Janet,
    Thanks for your comments. Sorry for my slow response, but with 2 OCD kids, we hit a rough patch which as you might expect, can be pretty overwhelming. Yes, we have had CBT, but our results were not overwhelming and like with medicine the effectiveness seems to diminish over time. One problem we encountered with therapy is that we would have some success, like diminishing a ritual, but another ritual would pop out to take its place. Maybe this has made me pessimistic but I think therapy is also overrated. There is a strong placebo effect and it seems to work for a while. I would not be surprised that there is a large percentage of OCD persons that just fall off the charts, as they stop seeing psychiatrists and psychologists.

    • Hi Craig, I’m sorry to hear your children haven’t had much success with ERP therapy. Your description of new OCD obsessions and compulsions showing up is very common, and I’ve written about it before: https://wordpress.com/posts/ocdtalk.wordpress.com?s=whack-a-mole. Some people compare it to the “whack-a-mole” game.
      I still believe ERP therapy works really well when you have a good OCD therapist and are committed to the therapy. I know of so many people who have reclaimed their lives through ERP therapy, my son included. Of course that doesn’t mean it works for everyone, but maybe you could try another therapist who you know is an expert in treating OCD? I wish you and your family all the best. I know it is a difficult journey, but there truly is hope.

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