Why you should know about PANS and PANDAS if you have OCD.

Hey everyone! 

It’s important for anyone with OCD, or those supporting people with OCD, to know about PANS and PANDAS, because these conditions can bring on obsessive-compulsive behaviours. The treatment options differ from those for OCD, so understanding these conditions helps you make informed decisions. Just a quick note first that PANS and PANDAS usually affect children and young people, so I’ll refer to this age group throughout this post, but please know that adult onset can also occur, too. 

Let’s get going! 

What Are PANS and PANDAS? 

PANS stands for Paediatric Acute-onset Neuropsychiatric Syndrome. 

PANDAS (a type of PANS) stands for Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections. 

In very simple terms, PANS and PANDAS are conditions where a child’s immune system reacts in an unusual way after an infection or illness, and that reaction affects the brain, often bringing on sudden and intense symptoms like obsessive-compulsive behaviours, anxiety, tics, eating restriction, mood changes, or difficulties at school. More on symptoms later! 

PANDAS specifically occurs after a Group A Strep infection, like strep throat or scarlet fever, while PANS can follow a variety of infections, such as COVID-19 or Chickenpox. 

What are the symptoms of PANS and PANDAS? 

Some of the main symptoms are: 

• New or intense obsessive thoughts 

• Sudden compulsive behaviours 

• Anxiety or panic 

• Tics or unusual movements 

• Changes in eating or sleep habits 

• Mood swings or emotional dysregulation 

• Trouble concentrating or performing at school 

Typically, in PANS and PANDAS, symptoms begin suddenly, although some families report there being early warning signs before a more abrupt onset of symptoms.

It’s important to note that you don’t need every symptom to consider PANS or PANDAS as a possible diagnosis. Even just a few symptoms, especially following an illness, can be a clue that something bigger is going on than ‘just anxiety’ or ‘just OCD’; although, of course, there’s nothing ‘just’ about these conditions either. It’s very common for people experiencing PANS or PANDAS to be misdiagnosed with another condition, such as OCD, anxiety or depression, or to be assessed for autism or other neurodivergence. So taking a variety of symptoms into account can help people get the correct diagnosis and the right treatment.

How do PANS and PANDAS differ from Typical OCD 

Typical OCD usually develops gradually with a little anxiety here, a worry there, slowly building over time as the OCD Loop spirals. But in PANS and PANDAS, the shift can be fast and dramatic, often within a couple of days, and tied to a physical trigger like an infection. 

That doesn’t mean all sudden OCD is PANS or PANDAS, and it doesn’t mean every child with OCD has one of these conditions. But it does mean that when symptoms come on suddenly - especially after an illness - it’s worth exploring whether the immune system might be involved too. 

Support and Understanding Are Available 

Although more people than ever now know about PANS and PANDAS, there is still a long way to go, especially in the medical field. It is very easy for families to feel lost and unsupported, but please know that help is available. 

And this is where I get to talk about one of my favourite charities! 

PANS PANDAS UK is an incredible charity started by families who have lived experience of PANS and PANDAS. It offers: 

• Information and resources for families, carers, and professionals. 

• Online and face-to-face support groups. 

• Training for educators and healthcare workers - I've done this, and it's excellent.  

• A community where parents can connect and feel understood. 

You can find them here PANS PANDAS UK Charity. 

Taming Olivia x PANS PANDAS UK 

Just over a year ago, we started working with the PANS PANDAS UK Youth Board on a project to spread the word about PANS and PANDAS and, hopefully, help young people experiencing the conditions to feel less alone. They wanted to create a character to help describe their different experiences of PANS or PANDAS, and the journey they have been on, along with their parents, friends, and different medical professionals. The result was this wonderful comic that shares the story of Glitch - a young boy with PANS - on his journey to get help. The Youth Board were an incredible part of the design process from the very start of the project. They helped create Glitch and the look and feel of the comic. They also came up with the story outline and provided ongoing feedback to ensure the story reflected real-life experiences and shared the most helpful and important information.

We are extremely proud and excited to introduce the result of our collaboration. Meet Glitch!

Read the comic here!

The Youth Panel would love to have new members, so please check out page six in the comic too!  

You can get more information about the project and find out everything and anything you could possibly want to know about PANS and PANDAS by visiting the wonderful PANS PANDAS UK site here.

And just want to end by saying a huge thank you to the team at PANS PANDAS UK for checking through this post with me to make sure it's factually correct and that I'm using the right language!

I hope this helps!

Sending loads of love,

Catherine xx

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