PANDAS and FAMILY QUALITY OF LIFE (FQOL):

1. PANDAS and FAMILY QUALITY OF LIFE (FQOL): What Occupational Therapists Need to Know Barbara Demchick, ScD, OTR/L, FAOTA Kate Eglseder, ScD, OTR/L Julia Ehler, MS, OTR/L Alison Mills, MS, OTR/L

2. OBJECTIVES • Participants will recognize signs and symptoms of PANDAS, and articulate the effect on quality of life of the family • Participants will articulate how PANDAS symptoms impact the child's occupational performance at home and at school, and discuss effective interventions • Participants will discuss the role OTs have in advocating for children with PANDAS and their families

3. “PANDAS, for some reason, is one of those diseases that just drains a family emotionally, physically, financially, spiritually, socially.” a mother

4. WHAT IS PANDAS? • Pediatric Autoimmune Neuropsychiatric Disorder associated with Streptococcal infections • Sudden onset of obsessive- compulsive disorder and/or tics following streptococcal infection in a previously healthy child • 5 diagnostic criteria • onset of OCD and/or tic disorder • pre-pubertal onset • relapsing and remitting of patterns of symptoms (May relapse in absence of strep- PANS) • temporal association between infection and symptoms • neurological abnormalities (Williams & Swedo, 2015)

5. SYMPTOMS MAY INCLUDE • emotional lability, • personality changes, • sensory defensiveness • attention deficit hyperactivity disorder • oppositional defiant disorder • depression • separation anxiety, • generalized anxiety • academic difficulties (Williams & Swedo, 2015) • May also see atypical eating, urinary frequency/pain, and hallucinations

6. PANDAS IS….. • Complex and difficult to diagnose as strep infection may go undiagnosed • A neurologic disorder-although may appear like a behavioral disorder

7. PANDAS • Impacts a child’s occupations at home and at school (Tona et al., 2017 ) • Affects quality of life of the entire family

8. https://www.youtube.com/watch?v=H2zB1ZRcuh8

9. MEDICAL INTERVENTIONS • SSRIs • Risperidone • Antibiotics • Steroids and non steroidal anti-inflammatory drugs • IVIG (Intravenous immunoglobulin) • Plasmaphoresis

10. PANDAS and YOUNG CHILDREN • When PANDAS develops in an older school aged child, symptoms are likely to be recognized as due to illness, due to the marked change in the child’s established behavior • PANDAS may be far more difficult to recognize in young children, before the establishment of school behaviors and routines.

11. OUR RESEARCH: RESEARCH QUESTIONS • How do families describe their FQOL when having a child displaying symptoms of PANDAS prior to or during first grade? • What factors enhance the family’s quality of life? • What factors hinder the family’s quality of life?

12. METHODOLOGY: STUDY DESIGN • Qualitative Phenomenological Design • Meaning of lived experiences of several individuals about a phenomenon • Allows researchers to understand each individual experience of the phenomenon to find the central underlying meaning.

13. METHODOLOGY: PARTICIPANTS & SETTING • Six families with a child diagnosed with PANDAS before or during first grade-convenience sample • 5 mothers and 1 mother/father dyad • Caucasian married and middle to upper middle class • Sampling to the point of redundancy • Exclusion criteria: child with diagnosis in addition to PANDAS not associated with disorder • Setting: family home or another setting chosen by the family

14. DATA COLLECTION • Following IRB approval and informed consent, families participated in 1 -1 ½ hour in person semi-structured interview with 2 researchers which was audiotaped • Open-ended, semi-structured interview guide featuring general questions about FQOL and PANDAS. • interview guide remained the same for all six interviews; conversations varied based on what families chose to disclose • Participants were asked to show photographs of family members to guide the discussion. • Field notes written following interview • Second phone interview to confirm findings and to clarify anything unclear

15. DATA ANALYSIS • In person interviews transcribed verbatim • Transcripts coded by all investigators and statements that provided an understanding of how the participants experienced the phenomenon were extracted from transcripts • Rigorous data analysis process: Data organized into meaningful clusters, and clusters were tied together into themes • Triangulation, bracketing, and member checking were used to ensure trustworthiness

16. RESULTS: LIFE TURNED UPSIDE DOWN • Parents’ descriptions of how the sudden PANDAS symptomology changed their lives in extreme ways, impacting daily activities, and triggering emotions • “And overnight, it’s literally like they wake up one morning and they won’t wear the clothes they chose the night before and they won’t eat the food that they love. And they hate grandma and they hate grandpa and they don’t want to go to church and they don’t like soccer” • “You have this beautiful young child that you love and you prayed for and it’s so wonderful and . . . is taken away and is replaced by someone who wants to kill you. And is screaming obscenities at you. And spits at your face and kicks your teeth out and breaks your ribs and, and breaks electronics and destroys your social life.” • Behaviors disturbed children themselves as well as the parents

17. RESULTS:MY CHILD IS NOT CRAZY • Lack of understanding of their children and themselves • Families’ impressions of ignorance about PANDAS within the community including the medical community; feelings of being viewed as bad parents. • “Hospitals don’t understand PANDAS; they just want to treat him as a psych patient” • “Even the people that love and really try to get and care the most, they don’t get it” • “. . . the first thing we got from everybody, that we are terrible people, terrible parents” • Parents search for professionals that will listen and help

18. RESULTS: EMOTIONAL DISTRESS WITHIN FAMILY • Describes impact on mental health of family members • “There’s always that element of the other shoe dropping” • “I’m 40 years old and I’m afraid of my 7-year-old”. • “. . . I just wanted to get in my car and drive away … but there’s nowhere to go. And I don’t really want to leave these people. I love them, but I just want to escape this” • “. . . There have been times where I have literally wanted to die. I have gone to counseling … And I have said, crying. . . ‘I can’t do this anymore.’ • “[My] other son has been terrorized and spends a lot of time by himself” • Counseling and support groups essential to their mental stability

19. RESULTS: MAJOR LIFE ALTERATION • Describes underlying large-scale changes that families have made and continue to make as a direct result of how PANDAS has impacted their families • Affects all areas of life- ie work, sleep, intimacy, homemaking, finances • Affects life decisions: moving, homeschooling, decision to limit family size • “There is not a moment it's not in my thoughts and there's not a way that our lives are not shaped by it and I think that's on the good days and bad days.” • “It’s very isolating socially.” • “If we didn’t have all the medical bills, we would be living a lot better than we do.” • “I can’t bring another child into this”

20. RESULTS: SCHOOL DRASTICALLY INFLUENCES FQOL • School experiences and staff affect FQOL • School personnel misinterpreted children’s symptoms: interpreted neurological symptoms as if they were voluntary • Teacher punishing verbal tics • So [the school professionals] were doing like a lot of handwriting and that was very frustrating for [my daughter] because her handwriting is good but then she’ll have a flair ….and her OT and I had sent them tons of articles and they still don’t understand that.” • “I felt like they, between her and that school social worker, they shoved us out the door, like they really pushed for home-in-hospital.”

21. RESULTS: SCHOOL (con’t) • School may positively affect FQOL • Principal who called mother when a child in the school had strep • Guidance counselor who checked in regularly • Teacher who let child leave class early to avoid crowded hallways • School staff educating themselves about PANDAS

22. LIMITATIONS

23. DISCUSSION • Fear of recurrence of symptoms, emotional distress among the parents and siblings, a lack of awareness and understanding of the diagnosis, frustration due to feeling unheard, financial stress, and a noteworthy impact that school had on their child’s success, or lack of it, impacted participants’ FQOL. • Support and understanding enhanced FQOL • Participants described their children experiencing anxiety, fear, mood dysregulation, changes in sensory integration, academic difficulties, decreased socialization, restrictive eating, decreased sleep, and other related issues which are congruent with parent comments from OT PANDAS research (Tona et al., 2017).

24. MORE DISCUSSION • Parent fear, anxiety, and frustration are consistent with the only study about family distress and PANDAS. • Families described  traumatizing experiences that significantly impacted their FQOL, which was not presented in any existing PANDAS literature. • Participants revealed that OTs working with their children overly focused on refining skills, such as handwriting, and did not provide adequate adaptations that would aid the children and families with overall better FQOL, consistent with literature on OT and PANDAS (Tona et al., 2017; Tona & Posner, 2011).

25. PARENTAL PERSPECTIVE

26. TAKE AWAYS: WHAT DO OT’s NEED TO KNOW • Other health impairments is most appropriate way to qualify student for special education services • The rapid onset and intensity of symptoms provides challenges as interventions that are typically employed in schools may not be suited to children with PANDAS. • Behavioral approaches to reward positive behavior and extinguish undesired behavior are unlikely to be effective (Doran, 2015), even though PANDAS looks like a behavioral disorder. • Although abrupt onset of sensory symptoms is characteristic of PANDAS, but must be differentiated from sensory processing disorder (Murphy , Gerardi,& Leckman, 2014) • Assuming a sensory processing cause of symptoms may prevent a child from receiving appropriate services quickly.

27. MORE TAKE AWAYS • OTs should focus on contextual factors and environmental adaptations and accommodations as opposed to interventions solely focused on improving person factors during exacerbations • Interventions to improve handwriting will not work during an exacerbation • Tics can be complex; while they look like voluntary behaviors they are not • Must understand the course of PANDAS, and be prepared to recognize it so we can help a child or family in crisis

28. STILL MORE • Families may be struggling, especially before diagnosis; OTs maybe the first professionals to recognize the signs and facilitate getting medical and educational services • Communicate with and support families • Service delivery must be flexible, and should include plans to respond rapidly to changes in student behaviors and needs; symptoms may change dramatically during the school year, either for the better – with a medication change or for worse with an exacerbation secondary to another infection.

29. Limited Evidence Based Interventions • But… some interventions have worked for some children

30. SOME EFFECTIVE INTERVENTIONS • Stress relieving activities, • Use of routines to reduce anxiety • Explicit teaching of problem-solving and conflict-management strategies • Extended time • Graphic and visual organizers • Modifications for academic and math difficulties • Smart pens • Word processors

31. MORE • Frequent breaks • Positive behavior supports • Accommodations (including sensory) • Interventions/ accommodations to address fatigue • Work with children and families to develop positive mental health and coping

32. REFERENCES • Demchick, B., Ehler,J., Marramar, S., Mills, A., & Nuneviller, A. (2019) Family quality of life when raising a child with pediatric autoimmune neuropsychiatric disorder associated with streptococcal infection (PANDAS). Journal of Occupational Therapy, Schools, & Early Intervention, 12(2), 182-199. • Demchick, B. & Eglseder, K. (2019). PANDAS: What Occupational Therapy Practitioners Should Know. OT Practice, 24(7),16-21. • Doran, P.R.(2015). Sudden behavioral changes in the classroom: What educators need to know about PANDAS and PANS. Beyond Behavior, 24(1), 31-37.

33. MORE REFERENCES • Murphy, T. K., Gerardi, D. M., & Leckman, J. F. (2014). Pediatric acute-onset neuropsychiatric syndrome. Psychiatric Clinics of North America, 37, 353–374. • Tona, J., Bhattacharjya, S. & Calaprice, D. (2017). Impact of PANS and PANDAS exacerbations on occupational performance. A mixed methods study. American Journal of Occupational Therapy, 71(3), 1-9. • Tona, J. & Posner, T. (2011). Pediatric autoimmune psychiatric disorders: A new frontier for occupational therapy intervention. OT Practice, 16(20) 14-19. • Williams, K. A., & Swedo, S. E. (2015). Post-infectious autoimmune disorders: Sydenham’ s chorea, PANDAS and beyond. Brain Research, 1617, 144–154.