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Young adults’ experiences of living with paediatric acute-onset neuropsychiatric syndrome. An interview study

Ulla-KarinSchön (2023) Young adults’ experiences of living with paediatric acute-onset neuropsychiatric syndrome. An interview study, International Journal of Qualitative Studies on Health and Well-being, 18:1, DOI: 10.1080/17482631.2023.2267268

This article explores experiential knowledge of living with paediatric acute-onset neuropsychiatric syndrome (PANS), and the factors that are associated with perceived good care.

  • Young adults living fairly isolated lives, dependent on care from relatives.
  • The illness was a tangible presence.
  • They perceived a lack of knowledge among healthcare staff on PANS in healthcare, and negative consequences linked to this. Their experience-based knowledge of their own illness is devalued in healthcare encounters.
  • A feeling of being pushed around in healthcare, without anyone taking responsibility for the treatment
  • Emphasized the need for increased knowledge among staff to identify PANS and be able to offer effective treatment.
Therapeutic plasma exchange in adolescent and adult patients with autoimmune neuropsychiatric disorders associated with streptococcal infections
Prus K, Weidner K, Alquist C. Therapeutic plasma exchange in adolescent and adult patients with autoimmune neuropsychiatric disorders associated with streptococcal infections. J Clin Apher. 2022 Dec;37(6):597-599. doi: 10.1002/jca.22023. Epub 2022 Oct 17. PMID: 36251457; PMCID: PMC10092170.

Therapeutic plasma exchange (TPE) has been recommended to remove relevant antibodies and treat symptomatic presentations in children and adolescents, but there are no studies that evaluate the use of TPE in patients who are diagnosed later in life. It is therefore unclear if using an accepted treatment for pediatric PANS/PANDAS patients would be beneficial in adults with prolonged PANDAS/PANS symptomatic histories. This study investigated 16 late adolescent and adult PANDAS/PANS patients’ responses to TPE. Improvement was noted in over half of the patients with available follow-up information.

Group A Beta-Hemolytic Streptococcus-Induced Tic-Like Movement Disorder in an Adult: A Case Report

Ilyas U, Umar Z, Lin D (August 26, 2022) Group A Beta-Hemolytic Streptococcus-Induced Tic-Like Movement Disorder in an Adult: A Case Report. Cureus 14(8): e28451. doi:10.7759/cureus.28451

“Our case report highlights the importance of a thorough history, including inquiring about past infections and investigations to look for autoimmune and infectious etiologies, including ASO and positive DNAse B titers, in adult patients with new onset movement disorders and no other identifiable etiology and risk factors. Further research is mandatory to investigate the incidence of movement disorders in the adult population after a streptococcal infection and the diagnostic approach and treatment modalities needed to manage such patients.”

PANDAS in an Adult?: A Case Report

PANDAS in an Adult?: A Case Report. Deshmukh RP, Mane AB, Singh S.Ind J Priv Psychiatry 2022; 16 (1):44-45. DOI: 10.5005/jp-journals-10067-0104

“We report a case in order to suggest that we should be alert while assessing OCD in young patients, as it might be secondary to streptococcal infection. This has therapeutic implications. Trials of immunomodulator therapy can be given as suggested in a few kinds of literature. Although still experimental, it may have potential for the future, especially in those not responding to conventional treatment… This report might suggest that PANDAS-like syndrome may occur in adults also. We should be cautious of this syndrome during treatment.”

Antistreptolysin-O Titers: Implications for Adult PANDAS

Letter to the Edito. Antistreptolysin-O Titers: Implications for Adult PANDAS. ANDREW J. CHURCH, B.SC., and RUSSELL C. DALE, M.B.CH.B., M.R.C.P., London, U.K. Published Online:1 Feb 2002. https://doi.org/10.1176/appi.ajp.159.2.320

To the Editor: A diagnosis of pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections (PANDAS) is made when neuropsychiatric disease is precipitated by streptococcal infection (1). Antistreptolysin-O titers are an important tool for diagnosing recent streptococcal infection in patients with Sydenham’s chorea and PANDAS, since throat cultures are usually negative because of the latent onset of the neuropsychiatric disease. The upper limit for normal antistreptolysin-O titers is 200 IU/ml in children, but no normal upper limit exists for healthy adults. We propose that an antistreptolysin-O titer of 270 IU/ml is the significant upper limit for healthy adults. This finding will aid in the investigation and diagnosis of new cases of adult PANDAS.

Plasmapheresis, Rituximab, and Ceftriaxone Provided Lasting Improvement for a 27-Year-Old Adult Male with Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS)

A Krouse, H Li, JA Krenzer, WN Rose. Plasmapheresis, Rituximab, and Ceftriaxone Provided Lasting Improvement for a 27-Year-Old Adult Male with PANDAS. Dept of Pathology, University of Wisconsin Hospital. Article

  • At 17 – developed sudden psychosis and confusion after GAS infection. Had elevated anti-streptolysin O (ASO) titers. Did not present with typical symptoms of PANDAS – OCD and/or tic-like symptoms were not observed. A tentative diagnosis of PANDAS was given. Treated with antipsychotics, antibiotics, tonsillectomy, and IVIG which resulted in remissions and relapses of his neuropsychiatric symptoms.
  • At age 27 – received a trial of therapeutic plasma exchange (TPE), rituximab, and ceftriaxone. Eventually resulted in sustained benefit and minimal fluctuations of his clinical symptoms.
Inflammation in the Neurocircuitry of Obsessive-Compulsive Disorder

Sophia Attwells, HBS; Elaine Setiawan, PhD; Alan A. Wilson, PhD, Pablo M. Rusjan, PhD; Romina Mizrahi, MD, PhD, FRCP(C); Laura Miler, HBS; Cynthia Xu, MD; Margaret Anne Richter, MD, FRCP(C); Alan Kahn, MD, FRCP(C); Stephen J. Kish, PhD; Sylvain Houle, MD, PhD, FRCP(C); Lakshmi Ravindran, MD, FRCP(C); Jeffrey H. Meyer, MD, PhD, FRCP(C)
JAMA Psychiatry 2017

The regional distribution of elevated TSPO VT argues that the autoimmune/neuroinflammatory theories of OCD should extend beyond the basal ganglia to include the cortico-striato-thalamo-cortical circuit. Immunomodulatory therapies should be investigated in adult OCD, rather than solely childhood OCD, particularly in cases with prominent distress when preventing compulsions.

Mental Health News Article
Brain Behavior Research Foundation Article