Whether you already have a diagnosis or are just exploring the possibility of PANDAS/PANS/AE, we hope to answer some of your most pressing questions here. Please contact us if you have suggestions for additional questions and answers we can add to help you and others.
Does my child have PANS / PANDAS?
If your child suddenly shows signs of OCD, ADHD, extreme anxiety, eating restrictions, deterioration in school performance, changes in hand writing, behavioral regression (baby talk), sensory sensitivities (noise, lights, texture), irritability and aggression, emotional lability (uncontrolled laughing or crying), tics, urinary problems, dilated pupils or other neurological symptoms after being sick with strep or another acute illness, it may indeed be PANS or PANDAS. Many parents describe this change as happening ‘overnight’ and/or can pinpoint the exact date of the change while other onsets can be more gradual. Brain inflammation after an illness, a form of Autoimmune Encephalitis, can present with symptoms of OCD, ADHD, severe anxiety, even hallucinations and other sometimes shocking neurological symptoms. Diagnosis typically depends on a sudden onset of symptoms and a combination of the clinical symptoms listed above. See below links for further diagnostic criteria.
Our pediatrician doesn't believe PANS/PANDAS exists, or won't discuss it with us. What do we do?
You aren't alone. 57% of PANS parents say they “met with doubting medical professionals who made us feel like we were crazy" before getting a diagnosis.
PANS / PANDAS is a clinical diagnosis that only describes a collection of symptoms and a general correlation. Untrained medical professionals who are not familiar with this disorder could feel uncomfortable testing, diagnosing or treating. This lack of knowledge about the disorder or the prevalence of the disorder may lead to you feeling that your provider is dismissive of your concerns. Do not give up. If your provider is open to learning more there are resources available to assist them with seeing their first PANDAS/PANS child. If they do not seem open to exploring a PANDAS/PANS diagnosis then it may be time to find another provider.
Autoimmune Encephalitis or Postinfectious Autoimmune Encephalopathy describe the underlying physical condition of children with PANS / PANDAS, and are more widely understood diagnoses. It may be helpful to discuss your child's condition in these terms, and ask for a referral to a Neurologist or Infectious Disease specialist with experience in these cases.
Regardless of what you call it, your child's symptoms and underlying cause should be investigated until you and your pediatrician understand what is happening in your child’s brain. Trust your gut. Don’t hesitate to reach out to NWPPN if you need help finding a provider who will listen to your concerns.
What treatment is available for PANS/PANDAS/AE?
Treatment varies depending on the severity of symptoms, but children with post-infection inflammation often receive one or more of the following: anti-inflammatories (from Advil to steroids), antibiotics (to beat or prevent further infection), psychiatric medication (for neurological symptoms), immune therapies like intravenous immunoglobulin (IVIG) or blood plasma exchange (aphaeresis).