There are many roadblocks to a PANS PANDAS diagnosis. The list below are some of the most common roadblocks but are not all-encompassing. Finding a PANS PANDAS literate provider is critical.
- Not all practitioners are PANS literate.
- Some are not aware that the PANS criteria are different than the PANDAS criteria.
- Some think that all patients have to have tics and are not aware of the other symptoms.
- Some think that all patients have to have a positive strep throat test – rapid or culture, but one only needs a temporal relationship to a strep infection or exposure. Strep doesn’t just happen in the throat. PANS does not require a relationship to strep. Triggers can be other infections or non-infectious triggers.
- It is a clinical diagnosis.
- Medical testing is only one facet. There is no single test.
- There is no biomarker for PANS or PANDAS.
- Infectious triggers and symptoms are not always immediately linked, especially if symptom onset is weeks after an infection.
- Also, not everyone has an acute infection. For example, one may not have physical signs of strep throat but be positive for the infection.
- Also, the immune response can be PANS PANDAS without any physical response.
- Essentially a spectrum disorder.
- There are many different symptoms, and symptoms can present differently.
- Symptom severity can range from mild to severe.
- Sudden onset or sudden worsening can be missed.
- Sometimes, the infection is treated promptly, so initial symptoms are not as severe.
- Sudden onset was mild.
- Symptoms aren’t linked together and are often blamed on age or another diagnosis.
- Symptoms dismissed and assumed to be a result of something else, for example – behaviors seen when a child is two or three can be dismissed as just part of the “terrible twos/threes.”
- Some doctors will misdiagnose as Tourette’s or OCD without looking at onset, triggers, or concurrent onset of other symptoms.
- Symptoms typically relapse and remit from year to year, so the big picture can be hard to see.
