PANDAS/PANS study: Family questionnaire

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Thank you for participating in this study! If you have a child with a diagnosis of Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS) or Pediatric Acute-Onset Neuropsychiatric Syndrome (PANS), we appreciate your completion of this survey.
We are studying how children are diagnosed with these diseases, what treatments are successful, how families interact with the medical system in the setting of this diagnosis, and the financial burden placed on families by this diagnosis.

Completion of the survey is voluntary. It should take approximately 20 minutes to complete.

This questionnaire is confidential. Please do not include your child's full name or date of birth.

Call (503)216-6050 with questions.

Who diagnosed your child with PANDAS/PANS?

Physician - Neurologist

Physician - Pediatrician/Family Practice

Physician - Psychiatrist

Psychologist

Nurse Practitioner or Physician Assistant

Naturopath

Chiropractor

Physician - Functional Medicine

Other:

What testing was done? Check all that apply:

Head imaging (MRI or CT)

Electroencephalogram (EEG)

Lumbar puncture (spinal tap)

Cunningham Panel

Lyme testing

Heavy metals

Serum amino acids

Genetic testing

Vitamin levels

Streptococcal testing: Rapid Strep

Streptococcal testing: Throat culture

Streptococcal testing: Anal or vaginal swab

Streptococcal testing: ASO titers

Mycoplasma testing

Viral testing

Other:

How old was your child when diagnosed?

What age did symptoms start?

What symptoms did your child have at the time of diagnosis? Please check all that apply:

Tics or involuntary movements

Anxiety

Obsessive-compulsive symptoms

Food restriction

Aggression

Irritability

Oppositional behavior

Episodic rage

Sleep disturbance (insomnia)

Depression

Hyperactivity

School problems

Seizures - Convulsive (grand mal)

Seizures - Absence (staring spells)

Seizures - Focal (petit mal)

Headaches

Ataxia

Sensory issues or Sensory Processing Disorder (SPD)

Behavioral regression (acting younger)

Auditory or visual hallucinations

School avoidance

Body aches

Urinary incontinence

Increased urinary frequency

ADHD/lack of attention and focus

Self-harm

Suicidal ideation

Other:

If your child had new onset of obsessive-compulsive symptoms, please describe these:

Did symptoms occur after a known infection?

Yes

Clear selection

If so, what kind of infection? (Streptococcal, Mycoplasmal, Lyme, viral)

Did these symptoms start suddenly (over a week or less)?

Yes

Clear selection

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