Impact of PANS and PANDAS Exacerbations on Occupational Performance: A Mixed-Methods Study

Tona, Janice; Bhattacharjya, Sutanuka; Calaprice, Denise

doi:10.5014/ajot.2017.022285

Cited by 13 publications

(18 citation statements)

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“…Despite the pronounced level of suffering and disability often associated with PANS episodes (Frankovich et al 2015 ; Nadeau et al 2015 ; Calaprice et al 2017 ; Tona et al 2017 ), a gold-standard treatment strategy has yet to be established, and approaches vary greatly both in nature and effectiveness. The various treatment strategies employed focus on elimination of inciting infectious agents (antibiotics), support of the immune system (intravenous immunoglobulin, IVIG), suppression of the autoimmune mechanism (IVIG, plasmapheresis, steroids), and/or direct treatment of psychiatric symptoms (antidepressants, anxiolytics, mood stabilizers).…”

Section: Introductionmentioning

confidence: 99%

Treatment of Pediatric Acute-Onset Neuropsychiatric Disorder in a Large Survey Population

Calaprice

Tona

Murphy

2018

Journal of Child and Adolescent Psychopharmacology

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Objective: The goal of this study was to investigate treatment histories and outcomes in a large community sample of youth with Pediatric Acute-onset Neuropsychiatric Syndrome (PANS), and, where appropriate, to examine the impact of immune deficiency on treatment outcomes.Methods: A comprehensive internet-based survey was completed by parents or guardians of youth who had received physician diagnoses of PANS, or by young adults (age 18+) who had themselves been diagnosed by a physician (N = 698). Data regarding the treatment histories of these patients, including the variety of medical and psychological treatments employed and the caregiver- or self-reported response to each, are presented.Results: The PANS patients in this study had commonly been treated with antibiotic (N = 675), anti-inflammatory (N = 437), and/or psychotropic therapy (N = 378). Response to antibiotic treatment was best when treatment was relatively aggressive, with broad-spectrum antibiotics and courses of >30 days generally producing the best results (i.e., up to 52% of patients achieving a “very effective” response). For immune-deficient patients (caregiver-reported laboratory studies below normal limits; N = 108), use of broad-spectrum antibiotics appeared to be particularly desirable. Anti-inflammatory therapies, including over-the-counter medications such as ibuprofen, were at least “somewhat effective” for most patients. Intravenous immunoglobulin (IVIG) had been used to treat PANS in 193 (28%) of the patients and was at least “somewhat effective” for 89%, although for 18% of these, the effect was not sustained. The highest rate of sustained response to IVIG treatment was seen in immune-deficient patients who received doses of at least 0.8 g/kg IVIG on a regular basis. Psychotropic medications, most commonly SSRIs (38% reported a trial), were commonly employed, but were often ineffective (e.g., 44% found SSRIs “somewhat” to “very effective”). Many patients (N = 473) had received some form of psychotherapy with some benefit, with cognitive behavioral therapy found to be at least somewhat effective in a majority of those treated with this modality.Conclusion: Among the PANS patients represented in this study, relatively aggressive treatment courses targeted at eradicating infection and modulating the inflammatory response appeared to provide the best caregiver-reported therapeutic results, and to be generally well tolerated. Given its relative efficacy and tolerability, treatment targeting the inflammatory response may represent an underutilized approach in this population. The results of this study should be considered in light of the limitations inherent in a self-selected and administered online survey.

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Section: Introductionmentioning

confidence: 99%

Treatment of Pediatric Acute-Onset Neuropsychiatric Disorder in a Large Survey Population

Calaprice

Tona

Murphy

2018

Journal of Child and Adolescent Psychopharmacology

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“…Tona et al [31] described activities of daily living, math, handwriting, extracurricular activities, free play, organized sports, community and family social participation, higher-level thinking, attention, memory, sequencing, emotional coping, and energy and drive were commonly affected during exacerbations. During exacerbations, children often required assistance and adaptation to remain functional or were unable to function at a typical level.…”

Section: Discussionmentioning

confidence: 99%

PANS/PANDAS: Clinical Experience in IVIG Treatment and State of the Art in Rehabilitation Approaches

et al. 2020

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Pediatric acute-onset neuropsychiatric syndrome (PANS) is a condition characterized by the abrupt, dramatic onset of obsessive–compulsive disorder (OCD) or eating restriction accompanied by equally abrupt and severe comorbid neuropsychiatric symptoms. PANDAS (pediatric autoimmune neuropsychiatric disorder associated with streptococcal infection) is a heterogeneous syndrome identified as post-Streptococcus pyogenes infection (β-hemolytic Streptococcus group A) complications regarding the central nervous system with specific involvement of neuropsychiatric and behavioral skills. In the first part of our study, we share our experience in the treatment of a group of extreme-grade (according to CY-BOCS severity scale) symptomatic patients with intravenous immunoglobulin (IVIG), following the most recent studies regarding the dosage of the drug. Our contribution is to share our experience made on a sample of 55 patients all in the highest level of a severity grade. In the second part of our study, we also analyze the literature on PANS/PANDAS rehabilitation therapy, since in the literature there is no discussion of union and comparison on this method. Objective: This study aims to evaluate the clinical features of the patients observed from different Italian cohorts, with the attempt at evaluating clinical response to IVIG treatment in children with an extreme severity grade of PANS/PANDAS disease. Furthermore, after having analyzed the literature, we propose rehabilitation therapy as an added value to the pharmacological treatment. Materials and Methods: A total of 55 patients with a diagnosis of PANS/PANDAS, who belonged to an extreme grade of disease, were enrolled. All patients were administered with IVIG treatment at 2 g/kg per day for two consecutive days. Results: From our study, a noticeable improvement (until complete remission) of symptoms was evident for at least one year in 47 out of 55 (85%) observed children, while 11 out of these 43 (25%) showed an evident symptoms remission in a single attempt and the remaining 32 (75%) required a second administration to notice a lasting symptomatic improvement.

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“…Additionally, children experiencing obsessive-compulsive symptoms may feel isolated from their peers, partly because their compulsive behavior leaves them little time to interact or socialize. They may avoid social settings as they are worried or anxious that others may notice these behaviors (Bernstein et al, 2010), and families may experience challenges participating in activities as well (Tona et al, 2017). Parents whose children have PANDAS and PANS also have reported a deterioration of community and family social participation during exacerbations, as well as decreased socialization as a family (Tona et al, 2017); these parents are at risk for emotional difficulties and frequently experience fear and isolation (McClelland et al, 2015).…”

Section: Social-emotional and Behavioralmentioning

confidence: 99%

“…They may avoid social settings as they are worried or anxious that others may notice these behaviors (Bernstein et al, 2010), and families may experience challenges participating in activities as well (Tona et al, 2017). Parents whose children have PANDAS and PANS also have reported a deterioration of community and family social participation during exacerbations, as well as decreased socialization as a family (Tona et al, 2017); these parents are at risk for emotional difficulties and frequently experience fear and isolation (McClelland et al, 2015). Families of children with PANS demonstrate greater caregiver burden than families of individuals with Alzheimer's disease (Farmer et al, 2018).…”

Section: Social-emotional and Behavioralmentioning

confidence: 99%

Pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections and pediatric acute-onset neuropsychiatric syndrome.

Hoppin¹,

Doran²

2023

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I n the mid-1990s, researchers at the National Institute of Mental Health (NIMH) identified a link between recent streptococcal infection and the development of neuropsychiatric symptoms such as separation anxiety, tics, behavioral regression, rage, restricted eating, and obsessive-compulsive disorder (OCD;Swedo et al., 1998). ETIOLOGYResearch has found that in pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections (PANDAS) and pediatric acute-onset neuropsychiatric syndrome (PANS), exposure to an infection or other agent that activates the immune system creates an immune response that goes awry, causing autoantibodies (or immune cells) to attack brain cells instead (Chang et al., 2015;Platt et al., 2017). The resulting inflammation causes obsessions, compulsions, hallucinations, restricted eating, motor difficulties and tics, behavioral challenges, and other symptoms. PANDAS and PANS typically have a distinct onset (Chang et al., 2015); however, if symptoms are mild at first, parents and clinicians may initially overlook the change in behavior as part of typical development (Rice Doran, 2016b).

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Impact of PANS and PANDAS Exacerbations on Occupational Performance: A Mixed-Methods Study

Abstract: Children with PANS present with pervasive occupational performance needs during exacerbation. Children and families may benefit from accommodations to maximize function during this turbulent period.

Cited by 13 publications

References 18 publications

Treatment of Pediatric Acute-Onset Neuropsychiatric Disorder in a Large Survey Population

Treatment of Pediatric Acute-Onset Neuropsychiatric Disorder in a Large Survey Population

PANS/PANDAS: Clinical Experience in IVIG Treatment and State of the Art in Rehabilitation Approaches

Pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections and pediatric acute-onset neuropsychiatric syndrome.

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