Common Themes from the Caregiver Experience & Handout

Patient & Family Experience with PANS/PANDAS

We encourage clinicians, teachers, providers, etc. to understand the human aspects of PANS/PANDAS as symptoms are often so distressing. It is essential to learn about the experience of patients and families living with PANS/PANDAS. 

  • Parents Fear – Behaviors can be scary and dangerous
  • Parents Fear – Symptoms coming back (PTSD)
  • Parents Fear – How devastating symptoms are, how incapacitated their child is
  • Patients Fear – Symptoms coming back (PTSD)
  • Patients Fear – Losing the ability to function, think clearly, read and write
  • Patients Fear – Losing friends and not being able to attend school, extra-curricular activities, social events.
  • Patients Fear – Certain medical interventions
  • By the lack of knowledge about PANS/PANDAS
  • Lack of receiving an accurate and timely diagnosis
  • Due to being blamed for the child’s behavior
  • Lack of compassion
  • Lack of resources and insurance-based coverage in most states
  • By the limited pool of providers who are well versed in PANS/PANDAS
Not Being Heard
  • Dismisses caregiver and patient input; do not believe what they experience
  • Healthcare community too often dismissive, misdiagnoses, patronizing,
  • The emergency room is often ineffective
  • Too often not provided appropriate treatment, sent to psychiatric wards where patients were heavily sedated and provided treatments that were ineffective or harmful
  • Relieved when practitioners listen and are not quick to judge

Caregiver Experience in PANS PANDAS

Caregiver Experience PANS PANDAS aspireSource: Implications for Advanced Practice Nurses When Pediatric Autoimmune Neuropsychiatric Disorders Associated With Streptococcal Infections (PANDAS) Is Suspected: A Qualitative Study McClelland, Molly, PhD, RN et al. Jnl Ped Health Care, 2015 Sep-Oct;29(5):442-52 doi:10.1016/j.pedhc.2015.03.005.

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