Research

European Advocacy Organizations Response to PANDAS/PANS Article

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.

Reduction in Obsessive Compulsive Disorder and Self-Injurious Behavior With Saccharomyces boulardii in a Child with Autism: A Case Report
Kobliner V, Mumper E, Baker SM. Reduction in Obsessive Compulsive Disorder and Self-Injurious Behavior With Saccharomyces boulardii in a Child with Autism: A Case Report. Integr Med (Encinitas). 2018 Dec;17(6):38-41. PMID: 31043927; PMCID: PMC6469440.

This case report describes the effective use of Saccharomyces boulardii in a boy with autism spectrum disorder, obsessive compulsive disorder (OCD), and self-injurious behavior (SIB). Gastrointestinal dysfunction and OCD are frequent comorbidities in autism, which may share a common etiology resulting from a disturbance in normal gut microbiota. Alterations in microbial diversity influence neuroinflammation and are linked to mood disorders, abdominal pain, and SIB. S boulardii is a nonpathogenic probiotic yeast that supports a healthy microbiome, enhances immune function, and reduces diarrhea. Treatment with S boulardii successfully reduced OCD and SIB symptoms in this child.

The Burden of Caring for a Child or Adolescent With Pediatric Acute-Onset Neuropsychiatric Syndrome (PANS): An Observational Longitudinal Study

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.

Precision Medicine: The Role of the MSIDS Model in Defining, Diagnosing, and Treating Chronic Lyme Disease/Post Treatment Lyme Disease Syndrome and Other Chronic Illness: Part 2
Horowitz RI, Freeman PR. Precision Medicine: The Role of the MSIDS Model in Defining, Diagnosing, and Treating Chronic Lyme Disease/Post Treatment Lyme Disease Syndrome and Other Chronic Illness: Part 2. Healthcare (Basel). 2018 Nov 5;6(4):129. doi: 10.3390/healthcare6040129. PMID: 30400667; PMCID: PMC6316761.
A patient symptom survey and a retrospective chart review of 200 patients was therefore performed on those patients with chronic Lyme disease/PTLDS to identify those variables on the MSIDS model with the greatest potential effect on regaining health. Results indicate that dapsone combination therapy decreased the severity of eight major Lyme symptoms, and multiple sources of inflammation (other infections, immune dysfunction, autoimmunity, food allergies/sensitivities, leaky gut, mineral deficiencies, environmental toxins with detoxification problems, and sleep disorders) along with downstream effects of inflammation may all affect chronic symptomatology. In part two of our observational study and review paper, we postulate that the use of this model can represent an important and needed paradigm shift in the diagnosis and treatment of chronic disease.
Figure 1. Percentage of patients with MSIDS abnormalities. Multiple overlapping abnormalities on the MSIDS map were associated with Lyme disease, contributing to ongoing symptomatology.
C-Reactive Protein Response in Patients With Post-Treatment Lyme Disease Symptoms Versus Those With Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

Melanie Uhde, Alyssa Indart, Brian A Fallon, Gary P Wormser, Adriana R Marques, Suzanne D Vernon, Armin Alaedini, C-Reactive Protein Response in Patients With Post-Treatment Lyme Disease Symptoms Versus Those With Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Clinical Infectious Diseases, Volume 67, Issue 8, 15 October 2018, Pages 1309–1310, https://doi.org/10.1093/cid/ciy299

The data suggest the presence of different inflammatory mechanisms in ME/CFS compared to PTLDS. This difference may stem from the potentially more diverse causes of ME/CFS symptoms compared to PTLDS. The lack of a significantly elevated CRP response in ME/CFS, despite indications of activation in other inflammatory pathways, requires further investigation.

Allergic Diseases and Immune-Mediated Food Disorders in Pediatric Acute-Onset Neuropsychiatric Syndrome

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.

The Diagnostic Value of Serological Studies in Pediatric Patients with Acute Mycoplasma Pneumoniae Infection

Lin LJ, Chang FC, Chi H, Jim WT, Tsung-Ning Huang D, Kung YH, Chiu NC, Chang L.
Journal of Microbiology, Immunology, and Infection-2018

In the pediatric population, combined serological tests of M. pneumoniae IgA and IgM, offer an accurate method of early diagnosis comparable to that of PCR, and can be an alternative choice for prompt detection of mycoplasma infections when PCR and culture are not available.

Intravenous immunoglobulin for the treatment of autoimmune encephalopathy in children with autism

Kathleen Connery, Marie Tippett, Leanna M. Delhey, Shannon Rose, John C. Slattery, Stephen G. Kahler, Juergen Hahn, Uwe Kruger, Madeleine W. Cunningham, Craig Shimasaki, Richard E. Frye
Transl Psychiatry-2018

In an open-labeled IVIG study in children with comorbid ASD and PANS/ PANDAS, anti-tubulin and anti-D2R (as measured by the Cunningham panel) were associated with responsiveness to IVIG treatment, suggesting that these autoantibodies could be biomarkers to select for positive IVIG treatment outcomes. Research continues to explore serum biomarkers and genetic risk factors that can provide a diagnostic tool and/or complement diagnosis in children with PANS/PANDAS.

Family Impacts Reported By Parents Raising Children With Pediatric Acute-onset Neuropsychiatric Syndrome (PANS)

Marcey Mettica, B.S., M.S
A Dissertation Submitted in Partial Fulfillment of the Requirements for The Degree of Doctor of Family Studies in The Graduate School of The Texas Woman’s University
PDF of Dissertation

This study explored variables that were thought to possiblyinfluence family impact and explored relationships between demographic factors, illness factors, and symptom severity with impact on the family