Did your child suddenly develop new neurological or behavioral problems after a sore throat or strep infection? Have they started showing obsessions, compulsions, hard-to-control urges, or sudden movements or sounds? Have you noticed new anxiety, bedwetting, emotional meltdowns or other changes? These can be signs of a condition called Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections, or PANDAS.
If your child talks about wanting to hurt themselves or is in crisis, call or text 988 to reach the 988 Suicide & Crisis Lifeline, or call 911.
How Common Is PANDAS?
PANDAS typically appears in children between age 3 and puberty. How common it is remains uncertain, and PANDAS is still an area of active research and some debate in the medical community.
What Causes PANDAS?
PANDAS is believed to be an autoimmune condition that follows an infection with group A streptococcus, most often strep throat. In PANDAS, the immune system appears to mistake proteins in the child’s own nervous system for parts of the bacteria, a process called cross-reactivity. The immune response is thought to target the basal ganglia, a group of brain structures that help regulate movement, behavior and emotion. The result is often a sudden and severe change in emotional and behavioral control (6).
What Are the Symptoms of PANDAS?
Often the first sign of PANDAS is the sudden appearance of obsessive thoughts and compulsive behaviors. Symptoms often begin a few weeks after a strep infection and can resemble obsessive-compulsive disorder (OCD) and Tourette syndrome. They can range from mild to severe and can quickly interfere with school and social life.
Emotional and behavioral symptoms can include repetitive or compulsive behaviors, separation anxiety, fear and panic attacks, screaming outbursts, irritability, frequent mood changes, emotional and developmental regression, hallucinations, depression and suicidal thoughts.
Physical symptoms can include tics and unusual movements; sensitivity to light, sound and touch; a decline in motor skills such as handwriting; hyperactivity or trouble concentrating; memory problems; sleep problems; refusing to eat, which can lead to weight loss; joint pain; frequent urination and bedwetting; and, in rare cases, a state of seeming unresponsiveness.
Symptoms can come on quickly, often peaking within two to three days, unlike most childhood psychiatric conditions, which develop gradually (6).
How Is PANDAS Diagnosed?
PANDAS is diagnosed by a physician. It falls under a broader category called PANS (Pediatric Acute-onset Neuropsychiatric Syndrome). The consensus criteria for PANS include an abrupt, dramatic onset of obsessive-compulsive symptoms or severely restricted eating.
The sudden onset must come with at least two other similarly severe symptoms from these categories: anxiety; emotional instability or depression; irritability, aggression or severely oppositional behavior; behavioral or developmental regression; a decline in school performance from attention, memory or thinking problems; sensory or movement problems; and physical symptoms such as sleep problems, bedwetting or frequent urination.
The symptoms also must not be better explained by another neurological or medical condition, such as Sydenham chorea (7).
How Does PANDAS Affect the Brain?
The brain has its own immune cells called microglia. Normally, microglia act as the brain’s cleanup crew and first responders. They clear away damaged cells and debris and respond to injury and infection.
When microglia stay overactive for too long, they can release substances that harm nerve cells, including inflammatory chemicals. Researchers believe this kind of overactivation may play a role in PANDAS.
Another type of immune cell, the B cell, makes antibodies. Antibodies tag germs so the immune system can find and destroy them, and they help the body remember infections it has already fought. In autoimmune conditions, antibodies can mistakenly tag the body’s own tissues.
A research review by Baj and colleagues reported studies showing that children with PANDAS had an enlarged striatum on brain imaging, along with high levels of antibodies in that area (1). The striatum is part of the basal ganglia network, which helps regulate behavior, emotion, thinking and movement. The tics, obsessions and behavioral outbursts in PANDAS are thought to result from the immune system disrupting this network. Another study by Pavone and colleagues found antibodies to the basal ganglia in nearly two-thirds of children with PANDAS (2).
Research is also exploring how the brain, immune system and gut interact. A study by Quagliariello and colleagues found that strep infections can change the bacteria in the gut in ways linked to inflammation. Young patients with PANDAS had different gut bacteria than healthy children, along with more signs of inflammation and reduced activity in gut pathways involved in producing brain chemicals (3).
How Is PANDAS Usually Treated?
Treatment for PANDAS usually begins with antibiotics to clear the strep infection. By the time PANDAS is recognized, the infection may be only part of the problem. When the immune response needs to be calmed, physicians may use steroid medications, and in more severe cases, intravenous immunoglobulin (IVIG).
Psychiatric medications are also commonly used, ranging from SSRIs for OCD symptoms to other medications for severe behavioral symptoms. These can be helpful, but all have potential side effects, so they need careful management by your child’s prescriber (16).
Several non-drug therapies have also shown some benefit. A study by Dutta and Cavanna found benefits from habit reversal training, in which a child learns to perform a competing behavior when they feel the urge to tic (4). The approach also builds a positive partnership between the child and provider, and it can help children feel more in control of tics that once seemed unstoppable.
A case study by Guido and colleagues reported that a child with PANDAS who completed eight sessions of eye movement desensitization and reprocessing (EMDR) therapy had a significant reduction in OCD symptoms (5). This was a single case, so more research is needed.
How the NeuroRescue Program Can Help
Care for PANDAS starts with managing the immune response, which is directed by your child’s pediatrician and other medical specialists. If your child may have an active immune reaction, we’ll coordinate with their medical team, who may prescribe medications such as steroids or IVIG. Our care works alongside your child’s medical and mental health care, never in place of it. Please don’t change any of your child’s medications without talking with their prescriber.
Once the immune response is stable, we focus on improving how the affected brain pathways work. Problems in the basal ganglia, the circuits connecting it to the frontal lobe, and the brain’s emotional centers can contribute to the tics and compulsions seen in PANDAS. We use targeted therapies and exercises to engage these areas and the brain regions that connect to them, with the goal of helping these systems work better. Every child is different, so every program is built around that child’s needs.
The connection between the frontal lobe and the basal ganglia, called the frontostriatal circuit, is especially important in PANDAS and other tic disorders. Together, these areas form one of the brain’s main braking systems, helping hold back unwanted behaviors and involuntary movements like tics. This system is affected in PANDAS, and although the cause is different, the effect on the basal ganglia is similar to what is seen in OCD, tic disorders and Tourette syndrome. Rehabilitation approaches used for these conditions may also help reduce some symptoms of PANDAS.
Research shows that the basal ganglia become more active when people suppress tics, and that as children get older, a part of the frontal lobe called the dorsolateral prefrontal cortex plays a larger role in holding back unwanted responses (8).
Eye movements and inhibition. When the brain’s dopamine system isn’t working well, it’s harder to resist unwanted urges, like the pull to look at something distracting. The same frontal and basal ganglia areas that help hold back unwanted responses also control certain kinds of eye movements. That means we can use eye movements both to measure how well these braking systems are working and to help train them.
We measure your child’s eye movements with videonystagmography (VNG), which uses infrared cameras to track a wide range of eye movements and compare them to typical results. One important type is the saccade, a quick jump of the eyes from one target to another. An anti-saccade asks the eyes to jump away from a new target instead of toward it. This is harder, because it means holding back the automatic urge to look at the target. Anti-saccades rely heavily on the dorsolateral prefrontal cortex. We often use anti-saccade exercises with children with PANDAS and tic disorders, with the goal of strengthening the brain’s ability to hold back unwanted responses.
Jeter and colleagues found that people with tic disorders made more errors on simple saccades, had slower reaction times on anti-saccades, and made more errors on saccades to remembered targets, which also require spatial memory (9).
Jung and colleagues found that people with Tourette syndrome had slower, weaker eye movements on simple saccade tasks than healthy people. But when simple saccades and anti-saccades were mixed together in a harder task, people with Tourette syndrome performed better than the healthy group (10). This suggests that people with Tourette syndrome may perform better on more challenging tasks than on simple, repetitive ones.
Rhythm and timing. Anti-saccade exercises are just one way to engage the brain’s braking systems. We also use rhythm and timing therapies aimed at improving coordination within the basal ganglia network. Studies show that motor timing is impaired in children with Tourette syndrome and related basal ganglia disorders (12). We use a therapy system called the Interactive Metronome, which has been studied for improving timing and related skills (13).
Balance. Children with basal ganglia disorders can also have problems with balance and posture. In one study, children with Tourette syndrome had more trouble keeping their balance than healthy children, especially when their senses were challenged (11). Poor balance raises the risk of falls and injuries, including concussion. When testing shows a need, your child’s program may include vestibular rehabilitation.
Primitive reflexes. Babies are born with automatic movement patterns called primitive reflexes, which help the brain develop. These normally fade during the first years of life. Some research has linked retained primitive reflexes with neurodevelopmental conditions, and some studies suggest that exercises to help these reflexes fade may be helpful in a range of neurodevelopmental disorders (14). When an exam shows retained reflexes, your child’s program may include these exercises.
Transcranial magnetic stimulation for adults. Transcranial magnetic stimulation (TMS) uses a magnetic coil placed against the head to deliver gentle magnetic pulses to the brain, and it has been studied for improving behavioral control, including tic suppression (15). At our clinic, TMS is provided by our psychiatric mental health nurse practitioner and is offered only to patients 18 and older. Because the effects of PANDAS can last into adulthood, it may be an option for older patients.
Every NeuroRescue Program is different, with therapies chosen based on testing and each person’s specific situation. No two brains are alike, and no two programs are either.
How the NeuroRescue Program Works
Your child’s NeuroRescue Program begins with their Discovery Day. We start with a detailed history and neurological exam, done at a pace that works for your child, to understand how the systems affected by PANDAS are working. We measure how their visual, vestibular and balance systems are working through computerized analysis of eye movements, inner ear reflexes and balance under different conditions.
Our testing includes videonystagmography and saccadometry to measure several types of eye movements, the video head impulse test to measure inner ear reflexes, and CAPS computerized posturography to assess how the eyes, inner ear and body work together to maintain balance. We also use NeuroSensoryMotor Integration testing to evaluate hand-eye coordination and cognition, and Virtualis testing to assess dynamic eye tracking and perception of vertical in a virtual reality environment.
We combine this with a thorough physical and neurological exam of your child’s sensory, motor, autonomic and cognitive systems. We also review any relevant lab work, imaging and prior testing, and integrate it with our findings.
Together, this helps us understand which parts of your child’s nervous system are working well, which are struggling, and how quickly they tire. We use that information to design a personal NeuroRescue Program, aimed at improving function and endurance in the systems that need support. Our testing also helps us decide when to push and when to let your child rest.
Our goal is to help your child feel more in control, more comfortable and more confident at home, at school and with friends.
Your Next Step
PANDAS can be overwhelming for children and families, but there is hope for improving function. To find out if the NeuroRescue Program is right for your child, contact one of our patient care coordinators to schedule a Discovery Day.
