PANDAS Symptoms Checklist
Pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections (PANDAS) present as neurological, mental and physical disturbances following infection with streptococcal-A, commonly known as strep throat. It is believed that PANDAS is an autoimmune disorder, and the strep bacteria causes the immune system to attack healthy cells in the brain. A PANDAS diagnosis is based on the collection of symptoms, test results (such as a throat culture or blood test) and your child’s medical history. There is currently no definitive test for PANDAS, but identifying PANDAS symptoms and signs can help confirm a diagnosis.
PANDAS causes a sudden onset of behavioral and neurological problems after a strep infection. Your child may exhibit other symptoms in addition to these, but the following are the most common among children with confirmed diagnoses:
- Sudden onset of OCD-like symptoms.
- Irritability or aggression.
- Depression or extreme moodiness.
- Poor motor coordination.
- Tics or unusual movements.
- Sensitivity to light, sound or touch.
- Visual hallucinations.
- Sleep disturbances or fatigue.
Clinical diagnostic criteria for PANDAS/PANS are specific and consist of the following:
- The sudden, dramatic onset of obsessive-compulsive disorder or extremely restricted food intake.
- The simultaneous appearance of additional neuropsychiatric symptoms with acute, severe onset from at least two of the following seven categories:
- Aggression, irritability or oppositional behaviors.
- A decline in school performance.
- Motor or sensory abnormalities.
- Emotional lability or depression.
- Behavioral (developmental) regression.
- Somatic symptoms, such as enuresis, sleep disturbances or increased urinary frequency.
- These symptoms are not better explained by another known medical condition or neurological disorder, such as Tourette disorder, Sydenham’s chorea or systemic lupus erythematosus.
If these symptoms sound familiar, and your child has had strep throat or recurring strep infections, it’s imperative to discuss this with your doctor. Left untreated, PANDAS symptoms often become more severe over time. There are several scales that are used to identify symptom severity for PANS and PANDAS. These include scales for neuropsychiatric symptoms, ratings for the severity of OCD symptoms and tics and a scale to evaluate caregiver burden (how much assistance your child needs to function). In addition to this checklist, these scales can help you present your child’s symptoms to their healthcare provider. You can find them here.
Signs of PANDAS are unique to each person, but the defining feature of PANDAS is the acute onset of disabling anxiety and mood lability with tics or obsessive-compulsive-like behavior. In PANDAS, symptoms come on abruptly (flare) and remit. This may come in cycles and include mental health disturbances, physical symptoms and behavioral issues. Keep in mind that while these symptoms generally appear right after a strep infection, some children experience symptoms four to six months later if their antibiotic treatment did not fully destroy the bacteria.
The symptoms for PANS (pediatric acute-onset neuropsychiatric syndrome) are extremely similar to PANDAS, but PANS is associated with other infections, such as Lyme disease, influenza or the common cold, while PANDAS is only associated with strep. Criteria for diagnosing PANDAS is similar to PANS and include the abrupt, pre-pubertal onset of obsessions, compulsions or tics. But for PANDAS, these must be associated with streptococcal infection and other neuropsychiatric symptoms. Some common symptoms include:
Obsessive-compulsive symptoms are different for everyone. Some common ones include:
- Contamination. Your child may fear germs or repeatedly wash their hands.
- Worry for self or others. They may worry that something they do will harm others or that someone or something is going to hurt them or their family.
- Doubting. A need for constant reassurance, or an inability to make decisions.
- Hoarding. Inability to get rid of objects that have no use.
- Number and color obsessions. Fixation on a certain number or color.
- Morality. They experience guilt and worry about being “bad.”
- Symmetry urges. The need to put items in order by color or number.
Motor tics are repetitive sounds and movements that are hard to control. They can appear as a series—performed in order—and provide relief for anxiety or discomfort. Your child may also grunt, cough, hum or repeat words. Additionally, they may experience facial grimacing, jerk their head, twitch their nose or repeatedly blink their eyes.
These can come in waves and cause intense emotional instability.
Academic skill regression
Your child may have symptoms similar to ADHD that impact their academic performance, such as hyperactivity, inability to sustain attention and poor impulse control. PANDAS can also cause brain fog, a decline in math skills and changes in handwriting.
Emotional lability is a neurological symptom that reduces an individual’s ability to control their emotional responses. Emotional lability can lead to uncontrollable laughing or crying. Extreme rage is another symptom that leads to violent behavior, uncontrollable screaming, throwing items and breaking objects.
Your child may experience sensory sensitivity, hallucinations or react negatively to loud noises and light.
PANDAS can cause difficulty sleeping, oversleeping and excessive fatigue. Your child may also develop a problem with bedwetting or night terrors.
This symptom can present as either refusing food or selective eating. Restrictive eating can be due to sensory sensitivities, fear of vomiting, fear of contamination or difficulty swallowing. Restrictive eating can lead to malnutrition. Contact your doctor immediately if your child experiences significant weight loss.
Your child may lose balance, have an unusual gait or have difficulty walking.
PANDAS is evaluated on a case-by-case basis and can be mild, moderate or severe. Your provider can help assess your child’s case by determining how much the symptoms interfere with daily life and inhibit your child from engaging in regular activities.
Parents often want to know if their child can outgrow PANDAS. Researchers are currently studying this, as PANDAS is a relatively new disease, and it can be difficult even to diagnose the illness. Currently, we do not have long-term data on this newly identified illness, but there is some evidence that points to puberty helping reduce symptoms of PANDAS—though it is not proven at this time. That’s why it is absolutely critical that parents of children with PANDAS or PANS remain vigilant in protecting their children from contracting strep, as the best cure is prevention in the case of this disease. Additionally, PANDAS/PANS parents need to seek prompt treatment if their child does contract strep to minimize the likelihood of developing PANDAS/PANS or worsening existing symptoms.
Are There PANDAS Symptoms in Adults?
While it may be possible for an adult to develop PANDAS, there hasn’t been much research done in this area. Currently, it is understood that PANDAS is a pediatric disease and symptoms seem to disappear in adulthood. It is not believed that a person would present with PANDAS symptoms later in life. As we continue to do more research on PANS and PANDAS, we will find out more about how it affects different age groups.
If you’re looking for additional resources and community support, join the PANDAS Network support group as a family or treating professional member.