Medical Concerns

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What is PANS and what is PANDAS? 

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PANS stands for Paediatric Acute-onset Neuropsychiatric Syndrome. It is a condition where the immune system misfires and targets a part of your brain. This leads to a variety of different symptoms such as Obsessive-Compulsive Disorder (OCD), which is where you may experience intrusive thoughts such as scary visions or a phrase in your mind, and compulsions which could be where you feel as if you have to repeat something in your mind or repeat a certain action or ritual. 

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Other symptoms include tics, which can cause you to make different movements and sounds. Some tics can be as simple as raising your eyebrows and making a slight noise, others can be as complex as yelling a phrase or throwing things and falling to the floor. Some people may experience sleep problems where you may struggle to get to sleep, keep waking up or have frightening dreams. Anxiety can also be a symptom of PANS/PANDAS. You may feel afraid to be alone, or worry about things, or have panic attacks. Rage attacks are another possible symptom of PANS/PANDAS. You may suddenly feel very angry, lose control of your rational thinking and actions, and may act out of character and do things you usually wouldn’t. You may also experience other symptoms such as needing to go to the toilet more often than usual or wetting, feeling as if you cannot eat due to food restriction, feeling depressed, having ‘brain fog’, having mood swings, being very hyperactive and unable to focus, stay still or be calm. Some people also find it far harder to do things they used to be able to do (such as write neatly, draw or do maths).

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PANDAS is a subset of PANS, triggered by group A streptococcal infections (GAS). Symptoms for both conditions are very similar.

The possible symptoms are wide-ranging and haven’t all been mentioned here. Both PANS and PANDAS often start very suddenly, improve over time (with treatment), but may get worse again following illness. We call this worsening of symptoms a ‘flare’. It is important to remember that not everyone has every symptom, and that symptoms can change in each flare or morph over time. Some people only ever have a few symptoms, others may have a variety. ​ 

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What is the treatment, and how do I get better?

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The treatment for PANS/PANDAS involves eliminating the triggering infection, reducing inflammation in the brain, supporting the immune system and addressing the neurological and psychiatric symptoms as they arise.

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Your doctor may prescribe antibiotics to get rid of any infection. They may also prescribe anti-inflammatories to reduce inflammation. You may also be asked to take anti-depressants or anti-anxiety medications to support you with depression and anxiety. Talking therapies are another treatment for PANS/PANDAS which can help you to understand and manage the worries and thoughts you may be having. Supplements and dietary changes may also be helpful.

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Make sure that you have contact with a doctor who understands PANS/PANDAS so that they can help to build a treatment plan for you. It is important that you seek advice on how to treat the condition as a medical condition, rather than just as a mental health condition.

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What sort of things could make my symptoms worse?

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Lots of different things can trigger a PANS/PANDAS flare. Obvious triggers are illnesses and infections such as throat and ear infections, flu, chicken pox or even skin infections like impetigo may make symptoms worse. Less obvious triggers could be things like dental work, allergies or exposure to mould. Basically, anything that triggers your immune system can trigger symptoms of PANS/PANDAS.

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I think I have PANS/PANDAS but have not been diagnosed. What do I do?

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Unfortunately, at the moment in the UK, there is a lack of understanding and lack of awareness around PANS/PANDAS. This means that PANS/PANDAS often goes misdiagnosed. If you believe you may have PANDAS or PANS, trust that you know yourself best and seek help from a doctor with knowledge on PANS/PANDAS. It may take time to get the correct diagnosis, but it is worth it.

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Will I get better by the time I'm an adult or when I am older?

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Whilst some people find that their PANS/PANDAS symptoms disappear with age and time, others may find that they persist into adulthood. Happily, with the right treatment and support, symptoms can be managed and dramatically reduced. Even if you may always have PANDAS / PANS, it won't always have control over your life.

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Am I going to experience all of the symptoms of PANS/PANDAS?

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Not necessarily. Some people only experience a few symptoms, and although symptoms can come and go, and may change with each flare, the right treatment and support can mean that symptoms can improve or even disappear altogether.

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Is PANS/PANDAS life-threatening?

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No, thankfully PANS/PANDAS in itself isn’t life threatening and will not give you a lower life expectancy. However, for some people a symptom of the condition is restricted eating. In rare and extreme cases this can become life-threatening due to malnourishment and weight loss. It is also possible that the psychological symptoms of PANS/PANDAS, such as self-harm and suicidal thoughts, may pose a risk to life. Thankfully, with the appropriate treatment and professional help, this is rare.

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Educational Concerns

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How do I cope with having PANS/PANDAS in school / college / university?

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PANS/PANDAS can make school really difficult in lots of different ways. OCD rituals may sometimes make it difficult to get to school on time and you may feel very anxious being away from the comfort of home and family. You may feel overwhelmed by the bright lights, loud noises, smells and crowds of people. Tics can make it difficult to focus and function normally in class. Your handwriting may be difficult to read, maths might be a struggle and your memory may be worse than usual.  You may feel fidgety and distracted. 

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All of these things can make school a tricky place to be. Try to be kind to yourself and give yourself credit for what you are able to do, rather than focusing too much on what you aren’t.

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Make sure that your parents talk to the school so that staff understand and can offer you support and accommodations when you need them. Some ideas for support include being allowed to use a laptop if handwriting is a problem, having extra time in exams and on assignments, having flexible school hours or shorter school days, having homework extensions, being allowed to have a ‘time out’ and work in a separate room if you choose to do so, and so on. Some people may struggle to attend school when in a flare because they simply not well enough.

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I feel like my teachers don’t understand. What can I do to help them understand PANS/PANDAS?

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Lots of teachers will not have heard of PANS/PANDAS, and will need some help to understand the conditions and how they affect you.

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Talking to the special educational needs coordinator (SENDCo), and supplying the staff with resources on PANS/PANDAS and information on the symptoms can be beneficial so that they understand and can put accommodations and adjustments in place to help you. With your help, they can write up a document explaining PANS/PANDAS, how it affects you in particular, and what helps you or makes things worse. This is sometimes called a Pupil Profile, or an Individual Education Plan (IEP). Depending on how much support you need, school may think about applying for an Educational Health Care Plan which guarantees that the specific help you require will be provided throughout your time at school and up to the age of 25.

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Mental Health Concerns

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What can I do when I am struggling?

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Living with PANS/PANDAS is hard, but you don’t have to go through this alone. If you are struggling, you can talk to others and ask for help. It is okay to say that you feel afraid, anxious, or depressed. Feeling that way is perfectly natural. [gs6] Try not to feel ashamed of your symptoms, or of having this condition. There is nothing to be ashamed of, and you are not alone. There are thousands of others with PANS/PANDAS who are going through similar struggles and know how you feel. 

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Being open about your feelings with family and friends is really important. They want to help, and want to understand what you are going through. You may feel more comfortable talking to a therapist, which your doctor will be able to arrange for you.

Most importantly of all, be kind to yourself and hang on to the knowledge that, with the correct treatment, life will be a lot brighter again.

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Therapy isn’t working or helping.  Am I doing something wrong?

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No! Therapy can be hugely helpful for people with PANS/PANDAS, however when you are in a flare, symptoms can be so severe that you may struggle to participate in therapy. Your anxiety may currently be too high to engage with the therapy fully, or your brain may not be functioning as well as it usually would so you may struggle to participate.

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Treating PANS/PANDAS involves treating the triggering infection, reducing inflammation, and addressing the psychological symptoms caused by the inflammation. Some people find that without first addressing the infection and inflammation, therapy may not be very effective, but can find it helpful later once their symptoms have begun to improve as a way to address any remaining anxieties or OCD behaviours.  Remember that just because therapy isn’t working for you right now doesn’t mean that it’s your fault, or that it will not help at a different point in time. 

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I feel guilty about my symptoms - what should  I do?

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Just because people with PANS/PANDAS may not look ‘ill’, doesn’t mean that they aren’t. You wouldn’t blame someone with a broken leg for not being able to walk, so please don’t blame yourself for the things that your illness has made difficult for you.

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Understanding that, during a flare, your brain is not able to work in the way it usually does is key to realising that you should not feel guilty for the way your brain is causing you to behave, think and feel. The symptoms of PANS/PANDAS, such as rage, anxiety, tics, toilet issues etc, are biological not behavioural. You are not choosing to behave in these ways therefore you are not responsible and should not feel guilty.

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Your symptoms are involuntary. They are misfired signals from the brain. Whilst you may question yourself or may feel like you need to ‘try harder’ or ‘control yourself’, it simply doesn’t work like that. In fact, trying to control your tics or OCD compulsions can be distressing, and may make tics and anxieties worse. If you are struggling with feelings of guilt then talk to someone about your feelings.

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My intrusive thoughts are upsetting me, what do I do?

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Intrusive thoughts are part of the OCD aspect of PANS/PANDAS. They can be scary and distressing and can make you feel as if you are sharing your mind with a bully. Intrusive thoughts and obsessions can come in many forms such as different phrases in your mind - a bit like a mental tic, but one that causes you anxiety. Intrusive thoughts can also include terrifying visions and inappropriate urges. Lots of people have intrusive thoughts, but for someone with PANS/PANDAS the intrusive thoughts can be very frequent and emotionally charged.

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Remember that you are not alone, and that these thoughts stem from OCD as a symptom of your condition.[gs10]  Having ‘bad thoughts’ doesn’t make you a ‘bad person’.

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Social Concerns

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Should I tell people close to me that I have PANS/PANDAS?

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Telling others about your condition is a personal choice. It can be beneficial to inform others about the condition as it can allow them to understand you better and know that your symptoms are not your fault. It can also make things easier for you if you do not feel that you are having to hide what you are going through.

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Why are my symptoms worse in one specific environment than in another?

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Some people find that their symptoms are different in different environments. For example, you may experience lots of tics, rage attacks, personality changes and OCD symptoms at home but not in school or college. This may be because people suppress their symptoms in certain situations. This is known as ‘masking’. This could be due to a fear of being judged which means that you ‘hold it together’ during the school day, but then your symptoms may explode once you get home to a place where you feel safe and not judged.

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Conversely, other people may find that their symptoms are worse in a public environment such as school or college, this could be due to anxiety and being away from familiarity, or it could be due to sensory overwhelm from lights, smells and sounds.

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Are there others like me?

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Yes! Although you may feel alone and misunderstood, there are many others out there who understand you and who go through the same struggles and experience the same symptoms as you. Surveys carried out in America suggest that PANS/PANDAS affects approximately 1 in 200 people (although many of these may be misdiagnosed with conditions such as Tourette’s, Autism, ADHD, classic OCD, anxiety, an eating disorder or a ‘behavioural problem’).

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Can I be in a relationship if I have PANS/PANDAS?

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Of course. Whilst PANS/PANDAS symptoms may, at points in time, mean that there is little time or headspace for thinking about relationships, it certainly doesn’t mean that you can’t ever date or be in a relationship. Being open and honest about your condition, and finding someone who is accepting and receptive to that is key to making it work. It is definitely possible to find someone who loves and accepts you for who you are.

 

Will PANS/PANDAS stop me from doing things which I love to do?

 

Having PANS/PANDAS can sometimes make it difficult to do the things you once loved and you may have difficulty doing daily tasks that others may take for granted, but that doesn’t mean that it will be like this forever. Over time, and with the right treatment, things can improve and your ability to do things can return.

 

What do I do if people in public ask questions about my condition or make comments about it?

 

People may notice your tics and OCD rituals when you are out in public. If people ask questions, then it can be used as an opportunity to explain PANS/PANDAS and to raise awareness, although sometimes you may feel too anxious to explain it and that’s okay. You could perhaps make yourself a card that explains what PANS/PANDAS is, or you could plan and rehearse what you would say in response to certain questions that you may be asked. Gradually people are becoming better educated and more understanding of disabilities and mental health conditions in general. The PANS PANDAS UK charity is making great progress in raising awareness. Hopefully, before long, it will be something that people are aware of and familiar with.

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