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Aspire

If we had a pediatrician who was knowledgeable about PANS/PANDAS, we could have treated him sooner. My son suffered for two years because of the medical community’s ignorance to this dreadful disorder.

Johnson, Fernell, Preda, Wallin, Fasth, Gillberg, Gillberg.
Lancet Child Adolesc Health-2019

Excerpt: Of 41 patients (37 referred and four visited upon parents’ request), 23 (ten girls and 13 boys) met PANS diagnostic criteria. Mean age at PANS onset was 8·5 years (SD 3·37). 11 (48%) patients had a family history of developmental or neuropsychiatric disorders in a first-degree relative and 11 (48%) had a family history of autoimmune or inflammatory diseases in a first-degree relative. 

Silverman M, Frankovich J, Nguyen E, Leibold C, Yoon J, Mark Freeman G Jr, Karpel H, Thienemann M.
J Psychiatr Res.-2019

Conclusions: Over 1/3 of children with PANS experienced transient hallucinations. They were more impaired than those without psychotic symptoms, but showed no differences in disease progression. This difference may point toward heterogeneity in PANS. When evaluating children with acute psychotic symptoms, clinicians should screen for abrupt-onset of a symptom cluster including OCD and/or food refusal, with neuropsychiatric symptoms (enuresis, handwriting changes, tics, hyperactivity, sleep disorder) before initiating treatment.

Abstract: Epidemiological studies, animal models, and case–control studies indicate maternal immune activation may be an important factor involved in disease expression of autism spectrum disorder (ASD), Tourette syndrome, and obsessive–compulsive disorder (OCD). We report eight children (mean age 6y 6mo [range 4–15y]; six males and two females) referred over a 2‐year period with at least one of these neurodevelopmental disorders plus a maternal history of thyroid autoimmunity…

Gamucci A, Uccella S, Sciarretta L, D’Apruzzo M, Calevo MG, Mancardi MM, Veneselli E, De Grandis E.
J Child Adolesc Psychopharmacology-2019

Conclusions: Despite these limitations, this study presents clinical, biological, and psychological features of a group of patients fulfilling the PANS and PANDAS criteria and discusses these results in comparison with patients with SC, a well-established clinical condition. Moreover, it adds notable findings to the existing little literature on neuropsychological functioning in youth diagnosed with these disorders, in particular PANS and PANDAS…

Williams KA.
Lancet Child Adolesc Health-2019

Leibold C, Thienemann M, Farhadian B, Willett T, Frankovich J.
J Child Adolesc Psychopharmacololgy-2019

Results: The GIS shows excellent discriminant validity, distinguishing patients with PANS from healthy controls. The scores on the GIS show an acceptable level of agreement with the clinician-reported CGAS. The regression line in the Bland–Altman plot had a positive slope, indicating that parents tend to report higher disease severity than clinicians at higher levels of disease severity. Correlation was higher during disease remissions than during disease flares (r = −0.69 vs. r = −0.48). All disease severity scales predicted GIS in the expected direction

Gerland Gunilla, Mogyorosi-Post, Anita, Cafferky Karen, Galardini Giuliana, Granli Kristin, Tuckey Georgia.
Journal of Pediatrics-2018
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As representatives of the pediatric acute-onset neuropsychiatric syndrome (PANS)/pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections (PANDAS) organizations in Europe, we have concerns about the commentary by Gilbert et al,1 given its potential to negatively influence the treatment of children suffering from these devastating conditions.

Köhler-Forsberg, Petersen, Gasse, Mortensen, Dalsgaard, Yolken, Benros
JAMA Psychiatry-2018

Conclusions and Relevance: Although the results cannot prove causality, these findings provide evidence for the involvement of infections and the immune system in the etiology of a wide range of mental disorders in children and adolescents.

Frankovich J, Leibold CM, Farmer C, Sainani K, Kamalani G, Farhadian B, Willett T, Park JM, Sidell D, J
Clin Psychiatry-2018

Conclusions: PANS caregivers suffer high caregiver burden. Neuropsychiatric disease severity predicts increased caregiver burden. Caregiver burden tends to decrease over time in a group of patients undergoing clinical treatment at a specialty PANS clinic. This decrease could be independent of clinical treatment.

Rosa JS, Hernandez JD, Sherr JA, Smith BM, Brown KD, Farhadian B, Mahony T, McGhee SA, Lewis DB, Thienemann M, Frankovich JD.
Pediatr Allergy Immunol Pulmonology-2018

Conclusions: The prevalence of allergic and immune-mediated food disorders in PANS is similar to the general population as reported in the literature, with the exception of AR that appears to be more prevalent in our PANS cohort. More research will be required to establish whether diet or allergies influence PANS symptoms.