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  1. 1 point
    I totally agree with your assessment - it is most likely instance of labeling a set of behaviors without looking at the cause. Many diagnosed with PDA syndrome share similar characteristics of those diagnosed with PANDAS - high anxiety, school refusal, PDD-NOS. Is PDA syndrome really describing a manifestation of auto immune disorder? I would say very possibly. Truthfully, to me, the value is not in the label of PDA syndrome but rather in the strategies that have been identified to help those with the presentation similar to PANDAS - namely the high anxiety and school refusal. Because not only do we battle in treating the auto immune disorder, we battle with its presentation. And to me, the latter is actually the harder of the two battles. It is already tough to deal with the high anxiety/school refusal, but it is even worse when the prescribed strategies don't seem to work AT ALL. But what they have determined with PDA syndrome is that normal strategies DO NOT WORK FOR THIS KIDS. To me, this is huge! This so correlates with our experience! So now we might have some better ways to deal with the presentations! Some insight on to what is really going on and HOW TO DEAL WITH IT! In the UK, where the PDA syndrome diagnosis is widely accepted, there are actually schools to deal solely with children with PDA. (But on the flip side, these kids may never get the real help for the root cause of their issues). I am currently reading Understanding Pathological Demand Avoidance Syndrome in Children by Phil Christie, et al. Anyway, I just thought I would share . . sorry about the weird spaces and punctuations but I am doing this without my glasses on, which really isn't the best idea.
  2. 1 point
    Personally, it sounds to me potentially like another instance of labeling a set of behaviors, rather than digging down into the genesis of the behavior. School refusal and flat out avoidance of stressful (or to be more precise, potentially stressful) activities have been, in our experience, a classic presentation of high anxiety. And if that high anxiety is the result of an autoimmune disorder, then you can slap any label you want on it, but that doesn't change what it is at its root. If UK professionals are treating this "syndrome" to address the behaviors but aren't extending beyond that surface to address the underlying cause, the response is likely to be incomplete and without staying power, IMHO.


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