PANS/PANDAS/CPAE: An Interview With Dr. Sydney Rice, Co-Director of The Children's Postinfectious Autoimmune Encephalopathy Center Of Excellence At The UA Steele Center
How did you first learn of PANS/PANDAS and what motivated you to begin treating children with childhood post infectious autoimmune encephalopathy?
While we had treated children with PANS/PANDAS intermittently and in isolation, we did not have a coordinated effort in this area. We were approached by a family who advocated for a comprehensive clinical and research program and we were inspired to try to help. Since 2016, when we opened the Children’s Postinfectious Autoimmune Encephalopathy (CPAE) Center of Excellence at Banner-University of Arizona, we have seen hundreds of children from all over the U.S.
Do you ever treat children who did not have an abrupt or acute onset, and if so, do they respond similarly to children who did have an abrupt onset?
We have treated children with “softer diagnosis” of PANS/PANDAS. In general, we have found that they do not respond as well to treatment as children who have a clear abrupt onset of symptoms associated with a clear precipitating infection.
Have you had any patients who had been diagnosed with autism who ended up actually having CPAE/PANS?
We have treated children who have autism who had a clear change in behavior related to an abrupt onset infection. They seem to have both autism as an underlying diagnosis and then have acquired PANS. They have responded to some interventions, but we have not seen that they return to baseline. One of the challenging aspects of treating children who have both CPAE and autism is that they have more difficulty with procedures and transitions in settings. We have worked hard to make sure that both children and providers are safe for all interventions.
What about bipolar disorder, oppositional defiant disorder, mood disorder-NOS, Tourette's, etc?
We see some of these conditions in association with the diagnosis of CPAE disorders (PANS/PANDAS). However, our primary diagnosis is based on symptoms like OCD and restricted eating as signs of the CPAE disorder diagnosis. If conditions such as mood disorder and Tourette syndrome are identified, we treat these conditions with the support of the psychologists and psychiatrists on our team.
How old was the youngest patient you've diagnosed with childhood post-infectious autoimmune encephalopathy? Can this persist into adulthood?
We have not seen the condition in children younger than 3 years of age. We have seen children who have concerns earlier, but they have not met criteria for the diagnosis. CPAE disorders are often an ongoing challenge in adulthood due to the associated issues with sequelae of psychiatric symptoms associated with the condition. The focus transitions to behavioral interventions that address symptom management rather than aggressive medical interventions.
What percentage of your patient population requires IVIG and how often is more than one round of IVIG necessary?
We are still assessing the percentage of children who receive IVIG. We are also learning more about how many children benefit from multiple rounds of IVIG. The Banner/UA CPAE Clinic has a protocol in effect in which we do baseline assessment for children, before IVIG, if they have qualified for this intervention. We prescribe 2 rounds of IVIG and then we assess again. If the child has not progressed, we recommend stopping the IVIG.
Do you see a difference in outcomes when children are treated promptly versus when they have been sick for years?
Our experience is that children who have prolonged symptoms do not make as much progress as children who are identified quickly and treated promptly.
In your opinion, why hasn’t PANS/PANDAS moved beyond controversy?
Conceptually, making a link between psychiatric illness and infection is challenging. We are still trying to clarify the biological underpinnings of these conditions. Providers who care for these children and who see the abrupt change after an infection are very aware of this condition. While there is still an ongoing effort to achieve widespread medical consensus in the larger community, advancements provided by the establishment of the CPAE Center, emerging clinics around the U.S., published guidelines and a rise in public awareness have all contributed to advancing the diagnosis and treatment of CPAE disorders.
Is there any research in the pipeline that you’re excited about or that you think will make a significant difference in the lives of children with childhood post infectious autoimmune encephalopathy?
The CPAE Center of Excellence hasseveral projects, in association with multiple clinical settings across the United States. These projects include:
Do you have any advice for parents with children who have CPAE/PANS?
Thank you to Dr. Rice for her willingness to be interviewed by board chair, Anna Conkey.