Is It Mental Health or Medical? PANDAS/PANS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infection/Pediatric Acute-onset Neuropsychiatric Syndrome)
The Family Court was created to focus special attention on individual and social problems concerning families and children. Consequently, its goals are to assist, to protect, and if possible, to restore families whose unity or well-being is threatened. This court is also charged with assuring that children within its jurisdiction receive care, guidance, and control conducive to their welfare and the best interest of the state. The Family Court also has jurisdiction over matters relating to delinquent, wayward, dependent, neglected, abused, or mentally deficient or mentally disordered children.
“The universal reaction from everyone was astonishment that this sickness is so misunderstood. We have enlightened the entire Family Court bench and many practitioners in the court system, and I am sure momentum will build. My expectations were exceeded!”
Associate Justice Merola
Interview with Magistrate Paulhus and Associate Justice Merola
ASPIRE is so thankful to Chief Judge Michael B. Forte, Magistrate Paulhus, and Associate Justice Merola for determining that this year’s Rhode Island Family Court conference focus would be on PANS PANDAS on Thursday, October 7, 2021. The lectures were thoughtfully curated with the perfect mix of the science, historical framework, education for schools, and family/patient input. It was an honor to speak about PANS in the School Setting along with Craig Shimasaki, PhD, MBA, Melissa McCormack, MD, Margaret Chapman, CNS, BC, and parent and patient panel members.
It was an honor to speak to the audience on PANS in the School Setting, focusing on how PANS PANDAS affects students’ learning and attending school and providing toolkits and handouts. I sat down with Magistrate Paulhus and Associate Justice Merola to ask a few questions after the conference. – Gabriella True, ASPIRE President
- Provider Toolkit, School Overview Toolkit, PANS in the School Setting Handout, Research Highlights, Provider List
What was the impetus for deciding that this year’s RI Family Court Conference should focus on PANS PANDAS?
Magistrate Paulhus: The impetus for hosting this year’s conference on PANS/PANDAS was to educate key decision-makers about the illnesses so they are able to identify children who might have the illness. It also was to inform the decision makers about the resources available (or lack thereof) to assess and treat the illnesses.
Associate Justice Merola: After looking into the topic, it appeared to me that there was a major misunderstanding of the condition and its treatment. Based on what I read, I thought it was imperative that people handling cases with children based on behaviors need to receive as much education as possible on the topic.
How do you see the Family Court using the information on PANS PANDAS discussed at the conference in the future? What impact will it have on children in your state?
Magistrate Paulhus: I hope key stakeholders will take the knowledge they obtained at the conference and use it in their day-to-day work. I hope it will have an impact such that children who otherwise may not have received appropriate assessments and treatment will receive them.
Associate Justice Merola: I believe that anyone in the Family Court system that encounters children and changes in behavior will be better able to properly screen for PANS/PANDAS and children that find themselves in the system will be better treated/served.
What were the most critical takeaway points from the lectures?
Magistrate Paulhus: I think there were many takeaway points. They involved the audience being introduced to PANS/PANDAS and the medical definitions of the same. Also, I think the audience was able to see how the diagnosis affects the children inflicted and their families. I think that decision makers will consider how the diagnosis will affect a child’s life and education. I hope decision makers will be more compassionate for the children and families of the PANS/PANDAS “world.”
Do you think some of the concerns over PANS PANDAS being considered controversial in some circles were alleviated by the information presented?
Magistrate Paulhus: I am not sure. People did not seem to identify or be concerned with the controversies because for most people this topic provided brand new information they did not possess.
Associate Justice Merola: I believe that the information presented at the conference educated people that had never heard of the condition. As for people that had a pre-conceived opinion of PANS/PANDAS, it radically changed the way they view the condition. I don’t think PANS/PANDAS is considered controversial any longer by the people that experienced the conference. In fact, I think the only controversial issue regarding it is why insurance won’t pay for diagnosis or treatment.
What change would you like to see in Rhode Island regarding PANS PANDAS?
Magistrate Paulhus: I would like to see legislation passed to cover IVIG. I would like to see Rhode Island establish a clinic to assess whether a child has PANS/PANDAS. I would like to see resources for appropriate treatment established in Rhode Island.
Associate Justice Merola: I would like to see a bill passed that makes insurance companies pay for testing and treatment of PANS/PANDAS.
Hosted by:
- Chief Judge Michael B. Forte
- Richard Merola, Associate Justice
- Magistrate Angela Paulhus
Speakers:
- Can Infections Really Trigger Neuropsychiatric and Behavioral Disorders? Understanding the Biological Basis for Autoimmune Attacks on the Brain – Craig Shimasaki, Ph.D., MBA
- The Pediatric Assessment, Treatment and Intervention of Children with PANDAS/PANS Symptoms – Melissa McCormack, M.D.
- PANDAS/PANS Effects on Caretakers and Research Results of Special Education Population – Margaret Chapman, CNS, BC
- The Educational Impact of PANDAS/PANS – Emily Klein, Education Specialist & Gabriella True, President of ASPIRE
- Parent Panel – Melissa Glynn-Hyman, LISCW & Melissa Giampietro, Special Educator & Jon Giampietro, Senior Vice President, TACO & Karen Fidler Smith, Special Educator
Audience:
- RI Family Court Judges and Magistrates
- DCYF’s legal team
- CASA (court-appointed special advocate) attorneys and volunteers
- Staff at the Child Advocate’s office and attorneys from the Public Defender and Attorney General’s office.
- Administrative supervisors and legal counsel from the Family Court
- School staff connected to attendance matters
Gabriella True
