What is the relationship between PANS & PANDAS and Tourette’s syndrome?
Susan Swedo, MD and Gabriella True sit down to discuss the relationship between PANS & PANDAS and Tourette’s Syndrome. You can have a dual diagnosis of PANS/PANDAS and Tourette’s Syndrome. Proper diagnosis is needed for appropriate treatment. If you see a doctor who will not even explore a PANS PANDAS diagnosis, please see a doctor who will carefully review your case to describe symptoms accurately and determine an accurate description of each symptom and diagnosis.
Gabriella True: What is the relationship between PANS & PANDAS and Tourette’s syndrome?
Dr. Swedo: Interesting question! Although we typically think of PANS & PANDAS and Tourette’s syndrome as describing two different conditions, in reality, there is tremendous overlap, and patients may appropriately be given both diagnoses.
By now, we’re all familiar with the relationship between obsessive-compulsive disorder (OCD) and PANS/PANDAS. OCD is the larger group and is defined by the presence of intrusive thoughts (obsessions) and/or unhelpful mental or behavioral rituals (compulsions) which interfere with functioning and occupy at least one hour each day. PANS is the term used to describe patients with an abrupt onset of OCD (or food/fluid intake restrictions) accompanied by at least two other types of symptoms (emotional, behavioral, cognitive, or physical difficulties). PANDAS is added to the diagnostic label if the acute-onset symptoms occur in a prepubertal child in the aftermath of a Group A streptococcal infection. Thus, a child might meet the criteria for all three diagnoses – OCD, PANS, and PANDAS.
The same is true for Tourette’s syndrome and PANDAS. Tourette’s syndrome is defined by the presence of at least one motor tic and at least one vocal tic for a year or longer. That definition gives a clue as to the arbitrariness of the diagnostic label – if a child has had an eye-blink tic and a throat clearing tic for 364 days, he has a tic disorder; if those same tics have been present for 366 days, he has Tourette’s syndrome. If the tics started suddenly, all came on simultaneously and reached peak severity within 24 – 48 hours, the diagnosis of PANDAS might be applied if evidence of a preceding Group A streptococcal infection/exposure is found. In such cases, OCD and other neuropsychiatric symptoms may also be present. If so, the child may meet the criteria for PANS; if not, the diagnoses would be PANDAS and tic disorder. If the motor and vocal tics persist for at least a year, the diagnoses would be updated to PANDAS and Tourette disorder (the more proper term for Tourette’s syndrome).
By now, you’re probably thinking, “This is nuts! Why does one set of symptoms have to have so many different names?” Another great question! It would certainly make it easier for us to talk with one another if everyone could agree to use the same diagnostic label for the same set of conditions. However, in the case of PANDAS and Tourette disorder, the conditions are overlapping, not identical, so it’s appropriate to clarify those differences by using different terms to describe the symptom sets.
In reality, most children with Tourette disorder have multiple diagnoses (just like those with PANDAS) because tics are a symptom of basal ganglia dysfunction. As we know, the basal ganglia act as one of the brain’s “gatekeepers” — dysfunction in the basal ganglia not only results in motoric abnormalities, but also problems with attention and focus (ADHD), depression, anxiety, emotional regulation (Irritability, aggression, emotional lability), cognitive dysfunction, and difficulties with sleep, appetite and many others.
The bottom line is that the specific diagnosis assigned is less important than ensuring the child’s symptoms are accurately described. For some children, a single diagnosis of Tourette disorder tells the whole story. For others, their diagnostic list might include not only Tourette disorder but also OCD, ADHD, separation anxiety disorder, and mild cognitive impairment. Each of these should be addressed separately and as a whole when developing a treatment plan. In addition, if the child’s symptoms came on suddenly and reached peak severity within 24-48 hours, the diagnoses of PANS and PANDAS should also be considered.
Return to Sensory & Motor Abnormalities
Read Romy Worthington’s Article Tourette & PANS Overlap