The PANDAS Controversy: Overcoming Challenges with Diagnosis

“I don’t get it. Is it Lyme? Is it Strep?”

Speaking to people about the PANDAS epidemic, usually ends in two outcomes, their eyes glaze over, or they ask a lot of questions. Most people unaffected by PANDAS just won’t get it. It’s a complex diagnosis with many moving pieces. Most people also don’t know how to explain why their kid is freaking out on a play date because you just walked out of the room?! Every day is different with PANDAS.

Even with its challenges, PANS and PANDAS cases aren’t new. It’s been present for decades but was rarely diagnosed accurately. Hopefully, with continued research and education, the identification of this diagnosis is on the rise.

So why is there so much controversy?

It begins with lack of research. Although there are currently multiple studies investigating PANDAS, only a small number of prospective studies exist. Studies are mostly conducted on animal models and retrospectively. This limits how much information we have at any moment to confirm what we see in clinical practice.

There is also ambiguity and skepticism in establishing a group A Strep relatedness to OCD, tics, and other symptoms. However, several studies have shown that children with OCD and tics were more likely than the control group to have prior Strep infections over three months before the onset of symptoms, and even more likely to have multiple Strep infections within 12 months before the onset of symptoms. More confirmatory research is needed, but the evidence is not scarce. In addition, it is important to remember that *various studies have found that 79% of pediatricians will treat presumed Strep with antibiotics without a positive culture.

Challenges with Diagnosis and Treatment of PANDAS

For example, if you take Johnny to the pediatrician because he is complaining about a sore throat and may also have a sinus or ear infection, the doctor may put him on antibiotics without ever confirming he had Strep. Fast forward to two months later when PANDAS symptoms abruptly appear, and there is no documented history of Strep. Now, these symptoms are considered a behavioral or psychological issue rather than what they are: abrupt-onset of neurological manifestations of an infectious and inflammatory disease.

The second issue that arises in this scenario is that if Johnny is treated with Amoxicillin several times in his lifetime, and then is suspected of having PANDAS, treatment with Amoxicillin alone might not help the symptoms, as he may now be resistant.

Conclusion

Being open to a trial of antibiotics or appropriate antimicrobials with the abrupt onset of neurobehavioral symptoms such as OCD, anxiety or tics, is the first step to turning this devastating illness into a treatable disorder. We provide evidence-based research and lots of pearls in our membership, open to both parents and professionals for your education and information.

References:

* Paluck, E., Katzenstein, D., Frankish, C. J., Herbert, C. P., Milner, R., Speert, D., & Chambers, K. (2001). Prescribing practices and attitudes toward giving children antibiotics. Canadian family physician Medecin mde famille canadien, 47, 521–527.)