“My child was fine last week, last month – and now I have lost her. This is not my child; what has happened??? What do I do??”
For every parent of a child with an illness, especially a mental illness, there is a unique story of how and when the illness struck. But when you meet a parent of a child with PANDAS/PANS (typically a child between ages 3–14), you will hear the same panicked story over and over. A child who was happy at home and at school and was social and athletic is now walking in circles for hours, washing hands until they bleed, asking the same questions over and over and over. A child that used to be comforted by a hug is now inconsolable. The child may be begging his or her parents for help, begging for a way to end the horror that exists only in his or her minds. These parents will tell you in detail about the day that their child changed.
What is PANDAS?
Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus (PANDAS) is the sudden, rapid-onset of obsessive compulsive behavior, as well as possible movement and behavioral symptoms, following a Streptococcus pyogenes (“Strep”) infection. The condition is thought to be the result of the child’s immune system mistakenly attacking an area of the brain, the basal ganglia, rather than the Strep infection.
What is PANS?
Newer research has shown that Strep is not the only infection that can cause these sudden-onset symptoms.  In a condition known as Pediatric Acute-onset Neuropsychiatric Syndrome (PANS), similar OCD symptoms are observed following an infection, such as mycoplasma, mononucleosis, Lyme disease, and even the H1N1 flu virus.
Signs and symptoms of PANDAS/PANS include:
- Acute sudden onset of OCD symptoms
- Challenges with eating, and at the extreme end, anorexia
- Sensory issues such as sensitivity to clothes, sound, and light
- Handwriting noticeably deteriorates
- Urinary frequency or bedwetting
- Small motor skills deteriorate
- Inattentive, distractible, unable to focus, and has difficulties with memory
- Overnight onset of anxiety or panic attacks over things that were no big deal a few days ago, such as thunderstorms or bugs
- Suddenly unable to separate from their caregiver or to sleep alone
- Screaming for hours on end
- Fear of germs and other more traditional OCD symptoms
Getting Help for PANDAS/PANS
- Professionals: Click here to learn more about clinical assessment, diagnosis, and treatment of PANDAS/PANS.
- Parents: Download a fact sheet about PANDAS/PANS to bring to your pediatrician. (PDF, 78 KB)
The first step in seeking treatment is to ensure that your pediatrician partners with a licensed mental health professional as soon as possible. Treatment for PANDAS/PANS includes addressing both the infection and the sudden onset of OCD symptoms.
All known infections should be treated by your pediatrician in accordance with the standards of care for each infectious agent. Family members should be tested and treated as indicated as well to ensure the infection is cleared from your home.
A trained therapist familiar with treating OCD in children and teens will address the OCD symptoms linked to PANDAS/PANS. Effective and research-proven therapies for OCD, such as cognitive behavioral therapy (CBT) and exposure and response prevention (ERP) may significantly improve OCD symptoms when administered by a trained therapist. Learn more about how to find a therapist and treating OCD with therapy here.
- PANDAS: Frequently Asked Questions about Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (NIMH)
- NIMH Director’s Blog: Microbes and Mental Illness
- From Research Subgroup to Clinical Syndrome: Modifying the PANDAS Criteria to Describe PANS (Pediatric Acute-onset Neuropsychiatric Syndrome) (PDF, 1.4 MB)