What Is PANS/PANDAS And How Does It Affect A Child?
Imagine your child going to bed perfectly normal only to wake up the next morning seeming like a completely different person. This sudden, dramatic change is a frightening reality for families dealing with PANS/PANDAS, a condition that can transform a child’s behavior and personality overnight.
What Is PANS/PANDAS?
PANS stands for Pediatric Acute-Onset Neuropsychiatric Syndrome. Under its umbrella is PANDAS, or Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. Both diseases are misdirected immune responses that cause inflammation in the brain, resulting in sudden and dramatic behavioral changes, according to the PANDAS Network.
Strep infection is the most common cause, resulting in PANDAS. But other bacterial or viral infections can also trigger onsets which can cause flares in children diagnosed with PANS.
How Does PANS/PANDAS Affect a Child?
PANS/PANDAS is more common than you might think. While research is still developing, the PANDAS Network reports that 1 out of every 200 children are affected. Most experience their first symptoms between ages 4 and 10.
PANS/PANDAS is an autoimmune disorder. When the body attempts to fight off an infection like strep, the immune system misdirects its response and affects the child’s brain instead. When the brain is inflamed, changes in a child’s behavior occur that aren’t present when there’s no inflammation.
Parents often attribute changes in their child’s behavior to everyday life at first, such as starting a new school, because symptoms start suddenly, fade once the triggering virus is gone, and return when the child is exposed to another triggering virus. These flares typically increase in frequency and severity over time, leading parents to suspect something more serious is going on.
“The basal ganglia lives right next to a part of the brain called the amygdala. They have connections to each other. So, the inflammation of the basal ganglia is causing the amygdala, the ‘fight or flight’ response part of the brain, to go off towards things that are not threats,” explained Dr. Margaret Jessop, a clinical psychologist who has experience working with children with PANS/PANDAS.
“So many parents will say, ‘I looked at my kid and he’s a shell of who he once was.’ Or, ‘They have a different look in their eye,'” said Lindsey Forsyth of Granger, a parent of two children with PANS/PANDAS.
What Are Symptoms of PANS/PANDAS?
PANS/PANDAS can present a variety of symptoms, many of which are common to other neurological conditions. As a result, getting a correct diagnosis can be challenging and confusing for families.
While symptoms can vary, the most common symptoms are:
- Obsessive-compulsive disorder
- Depression and/or anxiety, including school refusal
- Increased fear
- Increased food restrictions, aversions or “picky eating” that seems sudden or excessive
Parents might also notice their child acting more aggressively. Many children regress in behavior and throw tantrums, wet the bed, or have night terrors even after having outgrown these behaviors years earlier. In some cases, these behaviors can be extreme.
Other symptoms can include:
- Sensory processing issues
- Decline in academic skills, such as loss of math ability or handwriting changes
- Development of motor and vocal tics or even hallucinations
Aspire, an advocacy group for PANS/PANDAS families, has an extensive list of symptoms.
Because the symptoms appear so suddenly and acutely, PANS/PANDAS can take a toll on the entire family. The children don’t understand what’s happening in their bodies. Parents try to help but often feel like nothing they do is helping. Siblings see the behavior and struggle to understand what’s going on. The entire family dynamic can be disrupted, causing stress and sometimes trauma for everyone.
How to Diagnose PANS/PANDAS
While PANS/PANDAS is believed to have been around for decades, research is still growing. Because of that, it can be challenging to get a diagnosis because many medical professionals may not understand the disease well.
If you suspect PANS/PANDAS, start by talking to your pediatrician. PANDAS Physicians Network also has a directory of doctors and medical professionals familiar with the disease.
The diagnostic process begins with reviewing symptoms and medical history, followed by a physical exam.
Doctors often look for evidence of strep (including but not limited to the throat) or other recent triggers to the immune system. They will also compare the timeline of neuropsychiatric symptoms to the medical history of spikes in the immune system. Having documentation of illness and flares can be extremely helpful.
The next step usually involves lab work. Tests for strep and other bacterial or viral infections can help determine if your child has PANDAS or PANS. Additional screenings will check things like amino acid and vitamin levels that may relate to other autoimmune conditions. Lab work is particularly helpful in seeing how the immune system responds to specific triggers.
Finally, a doctor might recommend imaging tests, such as an EEG or EKG. These tests can help rule out any other diagnosis with similar symptoms and ensure that a PANS/PANDAS diagnosis is accurate.
What Next? Can PANS/PANDAS Be Treated?
The good news is that PANS/PANDAS can be treated! The PANDAS Physician Network describes the three-pronged approach that treatment usually follows. Specific options might vary slightly, depending on the virus(es) that trigger a PANS/PANDAS flare and each individual patient.
- Antibiotics or other medications help address the infection identified as the trigger. Strep is the most common cause, but symptom flares can also be triggered by other infections, such as the Epstein Barr virus.
- Medication, such as steroids, might be prescribed to reduce the inflammation causing symptom flares. Over-the-counter NSAIDs (like ibuprofen) may also help treat inflammation related to PANS/PANDAS.
- Psychotherapeutic interventions are often recommended to help manage symptoms associated with mental health disorders. This can include both cognitive behavior therapy (CBT) as well as medication. These approaches are particularly helpful for issues related to disrupted parent/child attachment or depression and anxiety that can develop when families struggle with symptoms over time, especially before receiving a diagnosis.
If your child has PANS/PANDAS, it can be confusing because each case is so different. But remember that treatment is available, resources exist, and you’re not alone. There’s help for your child, for you as parents, and for your family as you all learn to treat and manage this condition together.
If you suspect your child has PANS/PANDAS and need help while waiting for a diagnosis or treatment, listen to the podcast Surviving The Flares: An Emotional Toolkit for PANS/PANDAS Families in Crisis Mode.
