YuJuan Zhang, MD, a pediatric rheumatologist at Tufts Medicine and Assistant Professor, Tufts University School of Medicine, explains what families should know about these conditions, how they are related, what symptoms to look for and how children are evaluated and treated.
“PANS/PANDAS patients present with neuropsychiatric symptoms caused by neuroinflammation (inflammation in the brain), so it is important to recognize that medical evaluation and medical intervention are often important for patients with sudden onset or worsening in neuropsychiatric symptoms,” said Dr. Zhang.
What are PANS and PANDAS?
PANS stands for Pediatric Acute-onset Neuropsychiatric Syndrome. It describes a pattern of symptoms in which a child has a sudden and dramatic onset of obsessive-compulsive disorder (OCD) or severely restricted eating, along with other sudden neuropsychiatric symptoms.
PANDAS stands for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. PANDAS is considered a subset of PANS in which the symptoms have a temporal association with a group A streptococcal, or strep, infection.
The most important feature of PANS and PANDAS is the very rapid onset or rapid worsening of symptoms. A child who was doing relatively well may appear to change dramatically over a matter of days.
How are PANS and PANDAS related?
The key difference is the potential trigger. PANDAS specifically involves a relationship between symptoms and a strep infection. PANS doesn't require a strep infection or even a known infection.
We're still learning about what causes PANS. In some children, an infection may be involved, while in others there may not be an identifiable trigger.
What psychological or behavioral symptoms can occur?
OCD or severely restricted eating are the central symptoms used when considering PANS. Children can also develop a range of emotional and behavioral changes very suddenly.
These may include:
- Severe anxiety or new separation anxiety
- Obsessive thoughts or compulsive behaviors
- Irritability, aggression or unusually oppositional behavior
- Sudden mood changes or depression
- New or worsening tics
- Difficulty concentrating or a sudden decline in school performance (or even school refusal)
- Changes in behavior or loss of previously acquired skills
- New fears or unusual emotional reactions
- Changes in eating, including severe food restriction
These symptoms can be extremely distressing for both the child and the family. It's important to remember that the child isn't simply choosing to behave differently. The abrupt change is an important part of the clinical picture.
What neurological or physical symptoms can occur?
PANS and PANDAS can involve much more than changes in mood or behavior. Children may also have neurological or physical symptoms.
Families may notice:
- Motor or vocal tics
- Changes in handwriting or other fine motor skills
- Increased sensitivity to sounds, touch, light or other sensory experiences
- Unusual movements
- Sleep problems
- Frequent urination or new bedwetting
- Joint pain
- Changes in coordination or motor function
Not every child will have all of these symptoms. What is particularly important is that several symptoms may appear around the same time and with a very sudden onset.
What causes PANS and PANDAS?
We don't yet have a complete answer, and this is an area of active research.
- PANDAS is associated with group A strep infection. Researchers believe that, in some children, the immune response to an infection may contribute to inflammation or changes affecting the brain and nervous system. However, we don't yet have a single test that can prove that this process is occurring in an individual child.
- PANS is broader. Possible triggers that have been studied include different infections and immune-related processes, but not every child has an identifiable trigger.
It's important for families to understand that having an infection doesn't automatically mean a child will develop PANS or PANDAS. Strep infections are common in children, while PANDAS is considered uncommon.
Are there risk factors that make a child more likely to develop PANS or PANDAS?
We don’t currently have a way to predict with certainty which children will develop PANS or PANDAS.
A history of strep infection is relevant when evaluating possible PANDAS, but having strep doesn't mean a child will develop the condition. Researchers are also studying whether genetic susceptibility, immune system factors and other environmental or medical factors may play a role.
More research is needed to understand why some children develop these sudden neuropsychiatric symptoms while most children with infections don't.
If my child suddenly develops OCD or tics after strep, does that mean they have PANDAS?
Not necessarily.
OCD and tic disorders are relatively common in children, and strep infections are also common. The timing and pattern of symptoms are very important.
For PANDAS, clinicians look for a sudden onset or worsening of OCD and/or tics, a childhood onset, an episodic pattern, neurological abnormalities and a temporal relationship with a group A strep infection.
A child having strep and OCD or tics at the same time doesn't automatically establish a diagnosis of PANDAS, but it's important to consider as a differential diagnosis.
How are PANS and PANDAS diagnosed?
There's no single blood test, scan or other laboratory test that can diagnose PANS or PANDAS.
Diagnosis requires a careful medical history and physical examination. We look closely at when the symptoms began, how quickly they developed, what symptoms appeared together and whether there are other medical or neurological conditions that could better explain them.
For PANS, the clinical criteria include a sudden onset of OCD or severely restricted eating plus at least two additional neuropsychiatric symptoms, such as anxiety, mood changes, behavioral changes, developmental regression, deterioration in school performance, sensory or motor abnormalities or sleep and urinary symptoms.
For possible PANDAS, clinicians also look for evidence of a relationship between symptoms and a group A strep infection.
Because many conditions can cause similar symptoms, a thorough evaluation is needed to help recognize possible triggers for PANS/PANDAS, signs of inflammatory markers and to rule out other autoimmune/inflammatory concerns that can mimic PANS/PANDAS. This is important rather than assuming that every sudden behavioral or psychiatric change is caused by PANS or PANDAS.
How are PANS and PANDAS treated?
Treatment depends on the individual child and what the evaluation shows.
The first step is to identify and treat any underlying infection or other medical condition when appropriate. Children may also benefit from treatments directed at their symptoms, such as cognitive behavioral therapy for OCD or anxiety and, in some cases, medication.
For children with PANDAS who have a confirmed strep infection, antibiotics may be used to treat the infection. However, long-term antibiotics are not routinely recommended simply to prevent future symptoms.
In some children with severe symptoms, specialists may consider additional treatments, including anti-inflammatory treatment and treatment addressing the children's neuropsychiatric symptoms if medical therapy alone isn't adequate.
Immune-directed therapies are an area of ongoing research, and these treatments need to be considered carefully based on the severity of illness, the child’s overall health and the available evidence.
What should parents do if their child suddenly changes?
Take sudden, dramatic changes seriously and talk with your child’s pediatrician.
If your child develops sudden OCD symptoms, severe food restriction, tics or major changes in behavior, mood, school performance, sleep or motor function, it's reasonable to seek an evaluation.
Keep track of when the symptoms started and any illnesses or infections that occurred around that time. It can also be helpful to write down the specific changes you have noticed and how quickly they developed.
What's the outlook for children with PANS or PANDAS?
The course can vary from child to child. Some children improve significantly, while others may have symptoms that recur or persist for a longer period of time.
Because we're still learning about the causes and mechanisms behind PANS and PANDAS, ongoing evaluation and individualized treatment are important. Families should know that there are ways to address the symptoms and support a child’s physical, emotional and psychological well-being while the underlying cause is being evaluated.
For parents, the most important thing is to recognize that a sudden change in a child’s behavior or neurological function deserves attention. Early evaluation can help identify potential causes and connect the child with appropriate support.
Have concerns About PANS or PANDAS?
If you’re concerned that your child may be experiencing symptoms of PANS or PANDAS, talk with your child’s pediatrician. They can help evaluate your child’s symptoms, discuss next steps and, when appropriate, provide a referral to a healthcare professional who specializes in PANS and PANDAS.
