What is PANDAS / PANS?
PANS (Paediatric Acute Onset Neuropsychiatric Syndrome) and PANDAS (Paediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal infections) are conditions that cause an individual's immune system to attack part of their brain called the Basal Ganglia. This leads to a variety of symptoms such as severe Obsessive Compulsive Disorder, food restriction, motor and vocal tics, a decline in handwriting and maths ability, developmental regression, psychosis, depression, separation anxiety, hyperactivity, brain fog, rage attacks, oppositional defiance and more. It is likely that you are reading this article because you have a student who has been diagnosed with, or is suspected to have PANDAS / PANS, or you want to learn more about the condition in case you come across a student who has it in the future. It is important to note that most people do not have every symptom, and symptoms can change and morph over time. Despite the name having the word paediatric in it, PANS can affect older students who are in further education.
Signs for teachers to look out for: Teachers, along with parents are often the first to notice that something is going on. Some doctors do not have the training on PANDAS / PANS to be able to identify it, so teachers can play a pivotal role in identifying whether a student may potentially have PANDAS / PANS. Identifying the condition, suggesting that it could play a role and recommending that a specialist is seen to assess the individual could change a life.
Some of the signs that teachers need to look out for include:
A deterioration in handwriting
Sudden Separation Anxiety
Reports of severe OCD
A change in demeanour, students with PANS / PANDAS can change and become defiant, aggressive, irritable and hyperactive when prior to the onset they were mellow, calm, kind etc.
Sudden Food Restriction
A decline in maths ability
An increased need to use the bathroom
Sudden and severe tics
Not everyone has every symptom, but multiple of these symptoms together, especially with a sudden onset, may indicate PANS / PANDAS. The diagnostic guidelines for PANS say that PANS should be diagnosed when an individual presents with abrupt onset OCD and / or food restriction along with 2 other neurological or psychiatric symptoms which can include the ones listed above.
What teachers need to know about the condition:
A student with PANS / PANDAS may have significant deterioration in their handwriting ability, this means that it can be uncomfortable to write and the writing may be illegible. Some students with PANDAS / PANS struggle with presentation and may find it hard to keep their writing against the margin. Please do not mark the student on their handwriting and presentation, the handwriting change is not something that can be remedied by more practice. Allowing the use of a word processor in class and in exams may be beneficial. If a person with PANS / PANDAS does write by hand, they may struggle to take in the information being taught as they are so focused on writing.
Attendance is a huge struggle for many students with PANS / PANDAS. OCD rituals in the morning can take hours meaning that a student may be late to school, and getting up earlier is unlikely to be an option because the OCD rituals can also make getting to bed on time virtually impossible and PANDAS / PANS often causes sleep disturbances such as insomnia. Please be understanding if a student with PANS / PANDAS is often late, the student and their family are likely doing the best they can. As well as this, when in a flare a student may be off school for quite some time. This should be expected and plans need to be put in place so that the student can catch up with their education once they are better.
The symptoms of PANDAS / PANS can look behavioural, but they are not. PANDAS / PANS leads to people being unable to control or regulate their emotions. Many people with PANDAS / PANS have rage attacks, and during a rage attack an individual may become violent and aggressive. It is important to note that this is not a reflection of the individual's true character, it is a symptom of the brain being attacked by the immune system and discipline is unlikely to reduce these attacks - it may actually exacerbate them. Personality changes can occur in PANDAS / PANS, meaning that a child who was once kind, sweet and easy going may become antagonistic, oppositional, irritable and defiant.
Tics can occur as part of PANDAS / PANS. The tics are unintentional and if a person tics a phrase then it is important to note that the individual does not mean what they tic and they do not choose what they tic. Tics do not have volume control, and telling someone to ‘tic quieter’ is likely to be counterproductive so the tics may get louder because the person is now focusing on them. If the tics do get louder or if someone tics something that may be deemed ‘socially inappropriate’, then please know that this is not defiance in any way, shape or form. Tics are a complex neurological symptom and can present in many different ways.
Remember that there is a lot going on that you cannot see. You cannot see the horrific intrusive thoughts that plague a student, you cannot see their self-critical depressive thoughts, their anxious worries or mental tics. You cannot see how crowded their mind is and how heavy the brain fog is. Be compassionate as there are a lot of hidden symptoms and even if a student appears fine, they could still be struggling immensely.
PANDAS / PANS separation anxiety can be extreme. High levels of emotional distress are likely to be experienced by a student with PANDAS / PANS related separation anxiety when away from their parents and in the school environment.
Symptoms can be very different in the home environment compared to how they present in the school environment. This is not because anything is wrong with the home environment but it is because the student often bottles up their symptoms in the classroom and then they explode when the individual gets back home. At home, an individual may experience extreme OCD, rages, defiance, tics and more, but they may not seem as prominent in the school environment. This is why it is important to have good home-school communication and understand that homework may be very difficult for students with PANS / PANDAS, so homework exemptions and extensions may be necessary.
A students academic ability may decline, especially maths, when in a flare. This is unlikely to be helped by extra intervention as a student’s maths ability may come back once their condition is treated. However, when the maths decline is left as a residual symptom that does not seem to go away and is chronic, then extra maths tuition and intervention may be beneficial to help a student reach their full potential.
PANDAS / PANS can cause serious depressive symptoms which can make it difficult for a student to have the motivation to do school work. When this occurs, it is more important for a student to look after their wellbeing than to focus on their grades as they may struggle to learn effectively when they are struggling so much emotionally.
Hyperactivity and inattention can suddenly develop in a person with PANDAS / PANS. An adolescent who is usually calm, mellow and focused may now experience intense motoric hyperactivity and restlessness, and may struggle to focus to the point where they can barely read or write as their attention span keeps ‘cutting out’ and they may have racing thoughts which they cannot control.
As well as this, focusing may be difficult for other reasons. A person may be experiencing OCD symptoms even if it is not outwardly visible. Pure-O OCD is where people may experience intrusive thoughts and mental compulsions (known as covert compulsions). This can take up someone's attention so much that they are hardly aware of what is going on around them and can barely write or process things as they are so consumed by the chaos in their mind. When an individual is ticcing, it can also make it difficult for them to focus as they keep getting disrupted by involuntary movements and vocalisations. Tic suppression (where an individual tries to hold in their tics to the detriment of their own wellbeing) can also make it difficult to focus as holding in the tic is the only thing the person can pay attention to at that time and tic suppression also causes great discomfort. Many people with PANDAS / PANS also experience brain fog which is where an individual may feel very ‘hazy’ and may struggle to think clearly and this can make it difficult to focus on or complete schoolwork.
PANDAS / PANS symptoms can be stable or non-existent for some time, but if the individual is exposed to an infection or virus, then the symptoms may explode and become debilitating - this can happen overnight.
A student with PANDAS / PANS may take frequent toilet breaks as urinary symptoms such as an increased need to urinate and enuresis (wetting) are common symptoms.
Some people find that their PANDAS / PANS symptoms are episodic or cyclical, so students symptoms may present slightly differently each day.
What schools can do to help:
Know that the accommodations listed below are just suggestions and that support needs to be tailored to the individual as there is 'no one size fits all.' The most important thing is to listen to what the student and their parents believe they need in order to get their needs met in the school environment. A students support needs may also change over time with flares, so it is important that accommodations are reviewed if a students needs change so that more support can be given when things are harder for them.
General Accommodations and Support:
Provide students with audiobooks if reading is an issue due to OCD, brain fog, tics or attention issues.
A reduced timetable may be beneficial for some students if their tics or anxiety make it difficult to attend school for the whole day.
Students may be allowed breaks from the class to let out their OCD compulsions or tics that they may have been suppressing (do not encourage tic suppression, it is better that a student feels confident enough to tic freely in class) or to release some of their hyperactivity or restlessness.
If students struggle to do things in the same way as their peers, help them adjust and find ways of doing things which work for them. This helps a student to develop resilience and know that it is okay to do things differently. It is also important that a student knows that it is okay if they find things difficult, of course they are going to find things difficult when their brain is being attacked by their immune system. It can help for students to know this as it can allow them to let go of some of the guilt they may be feeling for struggling and develop self-compassion whilst still seeing that they have strengths, this can do wonders for someone’s self-esteem.
Allow students to be emailed the slideshow from a class after class or have photocopies of another students notes (with that students permission). This can help if people either struggle to take their own notes in class or didn’t take much of the information in due to their symptoms.
Allow students to find ways to manage symptoms. If students find it helpful to chew gum, doodle or use fidget tools then let it happen.
Skip reading aloud. Reading aloud can be difficult for people with vocal tics as the tics may become more prominent and it can also be difficult with OCD as people may re-read certain words over and over again and some people may find reading aloud incredibly stressful and anxiety provoking, therefore it may worsen symptoms.
Have seating arrangements where people can leave class easily and be away from distractions.
Keep desks as clear as possible so that people do not get distracted by their surroundings and so that objects on the desk do not get thrown as a tic.
Inform parents if there has been a case of strep in any of the students' classes and practice good hygiene and sanitise areas that a student with strep or another infectious trigger has come into contact with so that the student with PANDAS / PANS has less risk of catching it.
Be there for the student to support them and do things that can raise their self-esteem. Living with PANDAS / PANS can lower someone's self esteem as they may feel naughty or ‘mean’ for having rage attacks which they cannot control or they may feel frustrated at themselves for having tics and OCD symptoms or feel unintelligent due to their decline in handwriting and maths ability and developmental regression. Highlight the students strengths, reward them for their work and allow them to feel good about themselves. Allow them to express their talents and interest by forming a lunchtime art club that they could join if they have a passion for art or giving them the opportunity to be involved in a school production (if their anxiety doesn’t prohibit it) to try and help with their confidence. Work with them to find ways to cope when their symptoms are bad and show understanding, empathy and compassion.
It is important for teachers to know that tics are uncontrollable and that what is ticced is not a reflection of the person's character (some people do not tic phrases, some people may just make sounds) . It is important for teachers to know to ignore the tics and to not send a student out of the class or single them out for ticcing. A student with tics deserves to be included just like everyone else.
When ticcing, it can be daunting for a student to be in assembly surrounded by other students. They cannot be quiet and may worry about drawing attention to themselves so it can be helpful for students with tics to have permission to miss assemblies, but do not send a student out of assembly for ticcing as this is highly discriminatory.
Use laminated paper if an individual has tics where they rip up paper, people could have a question paper laminated (or virtually may be easier) and then they could type the answers up onto a laptop.
Exams can be completed in a separate room if a student has tics and other exam access arrangements can be considered such as rest breaks, extra time and more.
Allow students to be out of certain lessons if their symptoms are worse there. Some students may find that certain lessons exacerbate their anxiety and tics, therefore a student may be given permission to work separately in a private area with a tutor or using textbooks. This should be the students choice as a student should never be sent or forced out of the classroom as that is discrimination / exclusion.
For Hyperactivity and Inattention (ADHD-like) Traits:
Be understanding if supplies or homework are forgotten. ADHD symptoms, memory decline and executive functioning issues are common in PANDAS / PANS so this can cause people to forget and lose things.
Allow a student to move around when they do work. ADHD symptoms are common in PANS / PANDAS so an individual may learn better when moving around or doing something in their own way. Please be understanding of this and ensure that the other students are also understanding. Know that the ADHD-like symptoms are not a choice and some people may find it virtually impossible to stay still and people may feel both under-stimulated and overstimulated at the same time and feel as if their mind has no reins and is out of control.
Reminder cards can be used to help with organisation. ADHD-like symptoms and memory decline are common in PANDAS / PANS, so people may need some sort of reminder card, maybe on a lanyard so that they don’t lose it, that can remind them of the things that they need to take to and take out of the class and can also remind them of things they need to do.
Provide activity breaks where the lessons are split up so that people can stay engaged and have an opportunity to move around and let off some steam.
For Sensory Processing Issues:
A card that allows students to leave class a few minutes early to avoid the rush of other students in the halls can be helpful for reducing overstimulation as sensory sensitivities are common in people with PANDAS / PANS.
Students may benefit from having a ‘safe space’ to retreat to at any time during the day. This means that students who find it difficult to stay and eat lunch in the hall with other students can have a place to go to away from overloading sensory input and can have a space to go to when their symptoms are bad so that they can relax if they feel that they cannot do the work at that time.
Allow students to wear ear defenders, sunglasses, chew necklaces or anything else that helps manage sensory issues.
Homework exemptions may be necessary in cases where a student has no usable time once they are home, this is common for students with PANDAS / PANS to have their ‘free time’ taken up by OCD rituals, so there is unlikely to be time to complete homework. In other cases, extensions may be made to homework and assignments.
It may help if a child with separation anxiety has a member of staff who they are close to in the school and who they can talk to so that they feel secure in the school environment. Having a gradual re-entry into school with a shorter timetable that slowly reaches the full school day may be helpful for some students.
Social and emotional support / management groups with other students may be helpful as they can help the student cope with their symptoms.
Ensure that students feel comfortable talking about their troubles and worries with a trusted member of staff, having someone to talk to can be very helpful.
For Urinary Symptoms:
Provide students with a card that shows they have permission to take frequent toilet breaks for medical reasons.
For Handwriting Problems:
Use of a word processor or having a scribe can be useful for students with handwriting difficulties.