PANS/PANDAS

One morning, your child wakes up acting completely different. They are overwhelmed with anxiety, showing sudden tics or unable to focus. It’s confusing, heartbreaking and scary. For many families, this is the reality of living with PANS or PANDAS. These conditions can appear out of nowhere, affecting daily life and leaving parents searching for answers.

At Banner Children's, we understand how distressing this can be. Our team is here to help uncover the cause of your child’s symptoms and provide effective treatments. 

What are PANS and PANDAS?

PANS stands for Pediatric Acute-Onset Neuropsychiatric Syndrome. PANDAS stands for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections. These conditions affect children and cause sudden changes in behavior, mental health and physical health. 

Causes of PANS and PANDAS

PANS and PANDAS often happen after an infection. In both conditions, the immune system misfires. Instead of attacking only harmful bacteria or viruses, it mistakenly targets healthy parts of the brain. 

The immune system’s response to these infections may cause swelling (inflammation) in the brain. This swelling affects areas of the brain called the basal ganglia. This area controls things like mood, emotions, behavior, cognition and sensations.

PANS can be caused by viral, bacterial or other infections, such as walking pneumonia (mycoplasma pneumonia), Lyme disease, chickenpox or the flu (influenza). Toxins or environmental factors may also play a role. Physical or emotional stress can make symptoms worse or bring them on.

PANDAS is a type of PANS that occurs after a strep infection (such as strep throat or scarlet fever). When a child has strep throat, the body creates antibodies to fight it. In some cases, these antibodies mistakenly target healthy brain cells. 

PANDAS is similar to another condition called Sydenham chorea, which also affects children after an infection. 

Who is at risk?

PANS and PANDAS usually affect children between three and 12 years old. Boys and girls are equally at risk. A family history of autoimmune disease might increase the chances of developing these conditions.

Signs and symptoms of PANS and PANDAS

Symptoms often start suddenly and may be severe. Parents often describe it as their child changing overnight. 

Signs include:

• Obsessive-compulsive behaviors: Children may have intrusive thoughts, excessive worry and repetitive compulsions. They may insist on touching objects in a specific order, excessively wash their hands or have recurring fears of contamination.
• Food aversions: New fears about foods, eating or choking or changes in appetite.
• Anxiety: Intense fear, especially about being away from family (separation anxiety).
• Tics or unusual movements: Jerking movements or uncontrollable sounds like those of Tourette syndrome.
• Behavioral changes: Irritable, aggressive or frequent mood swings. 
• School performance declines: Sudden change in math and reading skills, trouble focusing or forgetting things easily.
• Bedwetting or urination problems: Sudden accidents during the day or night.
• Sleep issues: Trouble falling asleep or staying asleep.
• Motor skills change: New trouble with handwriting or other fine motor skills like buttoning shirts or tying shoes. 
• Sensory sensitivities: Overly sensitive to sounds, lights, textures or smells.

If your child has sudden, severe changes in behavior or physical health, don’t wait to seek help. Early diagnosis and treatment can make a big difference. Contact your child’s health care provider or a Banner Children's specialist to schedule an appointment. 

Diagnosing PANS and PANDAS

The diagnosis is difficult as there is no definitive or single test to confirm PANS or PANDAS. Your child’s health care provider or specialist will carefully review your child’s medical history and perform a physical exam. They may order several blood tests, a strep test, urine test and imaging to see if an infection or something else is causing the symptoms. 

Diagnosing these conditions can be challenging as the symptoms can look like other conditions. The provider may also refer your child to other specialists to rule out other conditions, such as:

• Autism spectrum disorder (ASD)
• Obsessive-compulsive disorder (OCD)
• Attention hyperactivity disorder (ADHD)
• Tourette syndrome
• Anxiety disorders (general anxiety, social anxiety and separation anxiety)

Specialists will work with you to piece together the puzzle and find answers for your child.

How are PANS and PANDAS treated?

Treatment for PANS or PANDAS focuses on three things:

• Treating the underlying cause
• Managing symptoms 
• Helping the immune system

Medical treatment

The first step is to find and treat the cause of the condition. If an infection, like strep throat, triggers the symptoms, health care specialists will treat it with antibiotics. In some cases, other infections or conditions may also need to be treated.

Managing symptoms

For the treatment of symptoms like OCD, anxiety or other mental health concerns, cognitive behavioral therapy (CBT) can be helpful. This can help children learn how to deal with their feelings, control their thoughts and improve their behavior. 

Medicine to reduce anxiety, improve behavior or help with OCD-like symptoms may also be used.

Helping the immune system

Sometimes, the immune system causes the brain to react in a way that leads to PANS or PANDAS symptoms. To help stop this, specialists may use treatments like non-steroidal anti-inflammatory medications (NSAIDs), steroids or intravenous immunoglobulin (IVIG). These treatments help calm the immune system and reduce inflammation in the brain. 

Each treatment plan is different. Health care providers work closely with families to find the best options. 

Living with PANS and PANDAS

Living with these conditions can be challenging for children and their families. Many children improve with proper treatment and support. However, recovery may take time and some symptoms could return during future infections. 

However, having a care plan in place can minimize flare-ups and reduce their impact. Here are some strategies to help cope:

• Stick to routines: Provide a structured and predictable routine at home. Minimize stressors and create a calm and nurturing environment. Try to keep bedtime, meals and daily activities consistent.
• Open communication: Encourage open and honest communication with your child. Talk to them about their feelings and concerns.
• Seek support: Connect with other families with children with PANS/PANDAS through support groups, online communities or local organizations. 
• Self-care: Remember to prioritize your own well-being as a parent or caregiver.
• Work with the school: For school-age children, work with teachers and administrators to let them know about your child’s diagnosis and how it affects learning and behavior. A 504 Plan or Individualized Education Program (IEP) can provide classroom accommodations, like extra time for assignments or breaks during the day. School counselors can also support your child during tough moments. 

Why choose Banner Health?

At Banner Children's, we have experience diagnosing and treating complex conditions like PANS and PANDAS. Our multidisciplinary team includes pediatricians, neurologists, psychologists and immunologists. 

We work closely with the Children’s Postinfectious Autoimmune Encephalopathy (CPAE) Center of Excellence at the University of Arizona, one of the top centers in the U.S. The CPAE Center combines research, patient care and teaching to help with neuropsychiatric disorders that are often missed or misdiagnosed in kids. This partnership helps ensure better care and understanding.

You don’t have to navigate this journey alone. With Banner Children's, you have a team of compassionate professionals ready to help. Contact us today to learn more about how we can support your child.