When A Child Is Misdiagnosed

Now and then, I come across a blog post that knocks me out because it says so much – especially when it focuses on issues that I’ve been wrestling with and have struggled to articulate. Such is the case with Ellen Seidman’s post Can Kids Be Wrongly Diagnosed With Cerebral Palsy? Yes, It Turns Out. If you haven’t read it yet, please do – it focuses on 2 kids who were misdiagnosed with Cerebral Palsy (CP) and eventually re-diagnosed (after years of effort by their parents) with a condition that was treatable with medication.

I’ve read this post 10 times since it was published. Why? Because there are so many important points covered. The ones that hit me over the head are as follows:

  • Biological conditions in kids can be misdiagnosed. Even conditions as impairing as CP. I’ve known this, yet there is something about a concrete example that clarifies issues for me. In this case, I’ve been writing about slippery diagnoses for behavioral and emotional conditions, including ADHD and a newly proposed disorder called Disruptive Mood Dysregulation Disorder or DMDD. I’ve talked about over- and under-diagnosis. But I haven’t said clearly that a big issue can be misdiagnosis, particularly when we don’t have biomarkers or other tests that can assist not just diagnosis but differential diagnosis (deciding between diagnoses).
  • Misdiagnosis can lead to an ineffective treatment plan. Okay, this sounds obvious, but the thing is we need to be conservative about offering medication as a treatment plan when it’s not at all clear that a child has one condition versus another condition (or even that they have a condition). This can be the case when we are trying to apply the diagnostic crieria of ADHD to toddlers, or when kids may receive a diagnosis of DDMD in part because they don’t meet criteria for other disorders.
  • I sympathize with parents of kids who seek out treatment and evaluation because the fact is that we don’t just want to help kids – we want to believe that we can make a condition go away. So the idea of diagnosis and biological treatment is seductive. As Ellen says:

While I do not mourn my son’s CP and adore every inch of who he is, if it were possible to make it all go away with a pill, of course I would.

Unfortunately, the reality is that in many cases medication doesn’t cure behavioral and emotional conditions – more typically the goal is to try to reduce the frequency and intensity of the most impairing symptoms.

The point of all this is that diagnosis and treatment is not a perfect science. Practitioners do not have an easy task when kids present with emotional and behavioral symptoms. And I’m not opposed in principle to pharmaceutical interventions with kids – many parents of kids with ADHD would be able to report that they do improve their child’s functioning. My concern is that we are seeing more and more investment in the “diagnosis -> medication” model for complex behavioral and emotional syndromes in younger and younger kids, and less emphasis on non-biological intervention plans that try to encourage behavioral change without reaching too hard for diagnoses that may not always be illuminating – and treatments that might not be justified.

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  1. by Sarah West

    On November 2, 2011 at 4:09 am

    Misdiagnosis is all too common,perhaps due to the rigid approach in testing the “problem”.Rather than looking at how children function.Labelling can lead to narrow outlook and could be used as an explantation rather than looking at the underlying function.

    There are more progressive ways, such as the pioneering work by Jane Lloyd, who has developed an assessment and profiling system that reveals processing styles and the potential blocks to ideal functioning,allowing children (and adults) to reach their full potential.