PANS/PANDAS Symptoms & Signs: A Checklist For Parents
Written by Kate Shore - 14th May 2024
Navigating the complexities of PANS/PANDAS can be daunting, especially when faced with puzzling symptoms that seemingly appear out of nowhere. For parents witnessing sudden changes in their child's behaviour, such as obsessive-compulsive rituals or routines, increased anxiety, or unexplained motor tics, it can be very confusing. In this second part of our PANS series, we dive into what PANS actually looks like in kids, offering a PANS/PANDAS symptoms checklist to help parents with the knowledge needed to recognise, understand, and navigate these complex disorders.
Understanding PANS/PANDAS Symptoms
PANS and PANDAS are conditions characterised by the sudden onset of neuropsychiatric symptoms, initiated by infections, environmental factors, or other immune system and inflammatory triggers. PANS is the umbrella term for this presentation, which includes this broad range of triggers, whereas PANDAS specifically links the onset to streptococcal infections. To understand more about what is PANS, when it was discovered and how common it is, jump back to part 1 of this PANS series here.
What are the symptoms of PANDAS and PANS?
PANS and PANDAS are complex conditions that can manifest in a variety of ways. While no two presentations of PANS will be the same, the symptoms commonly seen in the clinic centre around:
Obsessive-compulsive rituals and repetitive behaviours
Anxiety, particularly separation anxiety
Motor and vocal tics, varying from blinking, throat clearing, repetitive sounds, and full body movements.
Restricted eating and unusual changes to dietary patterns
Mood swings and aggression
Sensory abnormalities
Diagnostic criteria
So if you’ve noticed a couple of these symptoms, maybe you’re wondering if could it be PANS or PANDAS?
Being a complex presentation, with lots of overlap with other conditions, clear guidelines for diagnosis are important. To assist healthcare practitioners in determining whether a child could have PANS, a diagnostic criteria was developed in 2013 at the First PANS Consensus Conference. (Read more about how this was created here).
The diagnostic criteria for PANS that were developed are as follows (1):
Abrupt, dramatic onset of obsessive-compulsive disorder (OCD) or severely restricted food intake.
Concurrent presence of additional neuropsychiatric symptoms, each with similarly severe and acute onset, from at least two of the following seven categories:
Anxiety
Emotional lability and/or depression
Irritability, aggression, and/or severely oppositional behaviours
Behavioural (developmental) regression
Deterioration in school performance (related to attention-deficit/hyperactivity disorder-like symptoms, memory deficits, cognitive changes)
Sensory or motor abnormalities
Somatic signs and symptoms, including sleep disturbances, enuresis, or urinary frequency
Symptoms are not better explained by a known neurological or medical disorder, such as Sydenham Chorea.
It's important to remember that many symptoms of PANS can overlap with those of other neurodevelopmental or psychiatric disorders, such as Sydenham Chorea, Tourette syndrome, OCD, Autism and ADHD. Therefore, a thorough evaluation by a qualified healthcare provider is necessary to determine whether a child meets the criteria for PANS diagnosis.
What does PANS look like in children?
So what does this actually all mean, and look like in a child with PANS in their day-to-day life? While the symptoms of PANS/PANDAS can vary widely from child to child, certain core symptoms are commonly seen. These include the sudden onset of OCD, anxiety and tics, often with no apparent trigger or explanation. Let’s break it down:
OCD behaviours: OCD-type behaviours include obsessive thoughts and compulsive behaviours. When exploring and distinguishing these in the clinic, we use the Children’s Yal-Brown Obsessive Compulsive Scale (CY-BOCS) (2) to distinguish between the two and determine severity.
Obsessions: Obsessive thoughts often revolve around cleanliness, symmetry, or harm, and can be intrusive and persistent, causing significant distress to the child. They can be thoughts, pictures or ideas that keep coming into your child’s mind even though they don’t want them to, and can vary from silly or embarrassing to unpleasant and scary. An example is persistent thoughts that germs are harming them or other people, or that something terrible might happen.
Compulsions: Alongside obsessive thoughts, children with PANS/PANDAS may engage in compulsive behaviours or rituals in an attempt to alleviate their anxiety or distress around obsessive thoughts. These rituals can range from repetitive handwashing to counting or arranging objects in a specific order and are behaviours that your child feels they have to do, even if they know it doesn’t make sense. An example is needing to wash their hands over and over even though they are not dirty.
Anxiety: Children with PANS/PANDAS often experience high levels of anxiety, which can interfere with their ability to function in daily life. This anxiety may be generalised or focused on specific fears or worries. Increased anxiety levels may show up as severe separation anxiety, excessive worry, fearfulness, or avoidance behaviours, particularly in children who previously didn’t experience these feelings.
Motor or Vocal Tics: Involuntary movements or sounds, known as tics, are another hallmark symptom of PANS/PANDAS. These tics can range from mild to severe and may wax and wane over time. Motor and vocal tics, such as eye blinking, throat clearing, or facial grimacing, can develop suddenly. We use the Yale Global Tic Severity Scale to determine the severity of tics (3) and monitor improvements.
Emotional Liability/Mood Swings: Rapid mood changes are common in children with PANS/PANDAS. They may go from happy and calm to angry or tearful in a matter of moments, making it challenging for parents to predict or manage their child's emotions.
Aggression: Some children with PANS/PANDAS may exhibit uncharacteristic aggression or violence towards themselves or others. This aggression can be triggered by frustration, fear, or sensory overload.
Restricted Eating: A key criteria seen in children with PANS/PANDAS is restricted eating habits (4). This may involve avoiding certain foods or food groups, exhibiting extreme selectivity in food choices, or developing rigid mealtime rituals. Children may express aversions to specific textures, colours, or smells where they previously had no issues.
Behavioural Regression: Children with PANS/PANDAS may revert to behaviours typical of a younger age, such as baby talk or temper tantrums. They may struggle to maintain previously acquired skills and behaviours, reverting to earlier developmental stages as a coping mechanism. This regression can impact various aspects of daily life, including communication, social interactions, and self-care routines.
Sensory Abnormalities: Heightened sensitivity to sensory stimuli is common in children with PANS/PANDAS (5). They may become overwhelmed by loud noises, bright lights, or certain textures, leading to meltdowns or withdrawal. Everyday sensory experiences they previously found tolerable may trigger intense discomfort or distress. For example, a child may cover their ears or retreat to a quiet space when exposed to noisy environments, such as crowded classrooms or bustling social gatherings. Similarly, they may avoid activities involving tactile sensations, such as messy play or wearing certain clothing fabrics.
Other Symptoms Associated with PANS
In addition to the core symptoms outlined above, there are other patterns that I often see in the clinic with children with PANS/PANDAS:
Decline in Cognitive Ability and/or Academic Skills: Children with PANS/PANDAS may experience a sudden decline in academic performance, struggling to concentrate, remember information, or complete tasks they once found easy. They may find it challenging to focus during class, leading to difficulties in understanding new concepts or retaining information. Tasks that require sustained attention and organisation, such as homework assignments or studying for tests, may become overwhelming and result in incomplete or hastily completed work. As a result, the child's grades may start to slip, and they may express frustration or discouragement about their academic struggles.
Changes to Urinary Frequency and Bedwetting: Some children with PANS/PANDAS may experience changes in urinary patterns, urinating more frequently than usual (6) For instance, a child may suddenly develop the feeling they need to urinate more often throughout the day or experience nighttime bedwetting despite being previously toilet-trained. These changes in urinary patterns can disrupt the child's daily routines and may be accompanied by physical discomfort, emotional distress or embarrassment.
Dysgraphia: Sudden onset dysgraphia, often observed in children with PANS/PANDAS, presents a unique challenge characterised by difficulties with handwriting or fine motor skills. Unlike developmental dysgraphia, which may manifest gradually over time, sudden dysgraphia can occur abruptly, causing a rapid deterioration in a child's handwriting abilities. Parents may notice that their child's handwriting, once neat and legible, has become illegible and disorganised seemingly overnight (7).
Seizures: Seizures are a less common but potentially serious symptom observed in some children with PANS/PANDAS. These seizures can manifest in various forms, including focal seizures, generalized tonic-clonic seizures, or absence seizures. Parents may observe sudden, unexplained changes in their child's behaviour, such as blank stares, repetitive movements, or loss of consciousness, indicative of a seizure episode.
Patterns and Episodic Course of Symptoms
PANS/PANDAS symptoms often follow a pattern of episodic flare-ups and remissions. During these exacerbations, parents may notice a significant increase in their child's OCD behaviours, anxiety levels, or motor tics, which can interfere with daily activities and routines. During remission, symptoms may subside or become less severe, allowing the child to function more effectively and engage in typical childhood activities.
These flare-ups may be triggered by stress, illness, or other environmental factors, and can last for days, weeks, or even months at a time.
However, it's important to note that the episodic nature of PANS/PANDAS symptoms can be unpredictable, and the duration and severity of flare-ups may vary from one child to another. Understanding these patterns and their triggers can help parents anticipate and prepare for flares.
Spectrum of Severity
PANS/PANDAS symptoms can range from mild to severe, with some children experiencing only mild symptoms that do not significantly impact their daily lives, while others may be severely debilitated by their symptoms and require intensive treatment and support. Every child is individual and will experience PANS/PANDAS differently.
If your child is exhibiting sudden onset symptoms of OCD, anxiety, or tics, or any other symptoms described above, it's important to consider the possibility of PANS/PANDAS. Early recognition and intervention are key to managing symptoms and improving your child's quality of life.
This article is part of a series on all things PANS and PANDAS. Part 1, ‘What is PANS/PANDAS'?’ is all about the difference between PANS and PANDAS, when it was first discovered and how common it is. If you missed it you can go back and read it here.
This series is for educational purposes and does not constitute individual health advice. PANS and PANDAS are complex conditions, and it is important to seek the advice of a practitioner to assess what is right for your child. If you have questions, speak with your primary healthcare practitioner or book a free chat here where we can discuss the individual circumstances of your family.
More about Kate Shore - Paediatric Naturopath:
Kate Shore is a children’s naturopath with a special interest and clinical focus on working with kids to improve their mental health. Kate received her Bachelor of Health Science from Torrens University and has established her practice in North Warrandyte, Melbourne, where she sees clients both locally and all over the world. Her approach draws heavily on nutrigenomics, microbiome testing, nutritional foundations, and lifestyle support. She works with a range of children and conditions, from PANS/PANDAS, OCD, tics, anxiety and depression, ADHD and autism.
If you want to get in touch or have any more questions about the above, you are welcome to get in touch here or make an time for a free chat here.
If you want to keep learning, keep reading the research here:
Chang, K., Frankovich, J., Cooperstock, M., Cunningham, M. W., Latimer, M. E., Murphy, T. K., ... & From the PANS Collaborative Consortium. (2015). Clinical evaluation of youth with pediatric acute-onset neuropsychiatric syndrome (PANS): recommendations from the 2013 PANS Consensus Conference. Journal of Child and Adolescent Psychopharmacology, 25(1), 3-13. https://www.liebertpub.com/doi/10.1089/cap.2014.0084
Storch, E. A., McGuire, J. F., Wu, M. S., Hamblin, R., McIngvale, E., Cepeda, S. L., Schneider, S. C., Rufino, K. A., Rasmussen, S. A., Price, L. H., & Goodman, W. K. (2019). Development and Psychometric Evaluation of the Children's Yale-Brown Obsessive-Compulsive Scale Second Edition. Journal of the American Academy of Child and Adolescent Psychiatry, 58(1), 92–98. https://doi.org/10.1016/j.jaac.2018.05.029
Haas, M., Jakubovski, E., Fremer, C., Dietrich, A., Hoekstra, P. J., Jäger, B., Müller-Vahl, K. R., & EMTICS Collaborative Group (2021). Yale Global Tic Severity Scale (YGTSS): Psychometric Quality of the Gold Standard for Tic Assessment Based on the Large-Scale EMTICS Study. Frontiers in psychiatry, 12, 626459. https://doi.org/10.3389/fpsyt.2021.626459
Toufexis, M. D., Hommer, R., Gerardi, D. M., Grant, P., Rothschild, L., D'Souza, P., ... & Murphy, T. K. (2015). Disordered eating and food restrictions in children with PANDAS/PANS. Journal of child and adolescent psychopharmacology, 25(1), 48-56. https://www.liebertpub.com/doi/abs/10.1089/cap.2014.0063
Newby, M. J., Lane, S. J., Haracz, K., Tona, J., Palazzi, K., & Lambkin, D. (2024). Sensory processing in children with Paediatric Acute‐onset Neuropsychiatric Syndrome. Australian Occupational Therapy Journal.https://www.liebertpub.com/doi/full/10.1089/cap.2021.0084
Ng, Q. X., Lim, Y. L., Loke, W., Yeo, W. S., & Chee, K. T. (2021). Obsessive-compulsive disorders and functional urinary disorders: a fortuitous association?. Behavioral Sciences, 11(6), 89. https://www.mdpi.com/2076-328X/11/6/89
Colvin, M. K., Erwin, S., Alluri, P. R., Laffer, A., Pasquariello, K., & Williams, K. A. (2021). Cognitive, graphomotor, and psychosocial challenges in pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections (PANDAS). The Journal of Neuropsychiatry and Clinical Neurosciences, 33(2), 90-97. https://neuro.psychiatryonline.org/doi/full/10.1176/appi.neuropsych.20030065