This story exemplifies how it is sometimes hard to see the sudden onset or sudden worsening of PANS PANDAS symptoms as you are living (struggling) through it. Remember, someone with PANS PANDAS does not need to be 100% free of all symptoms, behaviors, delays, etc. before onset; symptoms can pile up. The boy featured in this story had several challenges prior to diagnosis. Hence, as his parents, providers, and educators kept trying new therapies, seeing gains then seeing the loss of those gains, it was hard to see the big picture and identify those periods of sudden onset and sudden worsening of symptoms. It was not until medical issues in his sibling were identified, including Bartonella, strep, and mycoplasma, was PANS PANDAS considered. Then the pieces fell into place, and it was easier to see when he had hit walls – i.e., when he had periods of regression and sudden worsening of behaviors.
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