For Parents, Caregivers and Families
If you are concerned that your child or a family member may have PANS and PANDAS, or if they have a diagnosis already, you are not alone.
On this page, you will find lots of information and support to help you, your child, and your family.
What are PANS and PANDAS?
PANS and PANDAS are medical disorders with both physical and mental health symptoms. It is thought that they are caused by an abnormal immune or inflammatory response to common infections such as Strep A, Covid-19 and chickenpox. The trigger for PANDAS is always Strep A, whereas PANS can be caused by other viral or bacterial infections.
What are the symptoms of PANS and PANDAS?
There are lots of different symptoms of PANS and PANDAS, and different people have different combinations of symptoms which may change over time. The main symptoms are new obsessive-compulsive behaviours, tics and/or eating restrictions. Other secondary symptoms include anxiety, changes in mood, difficulties with toileting and sleep, sensory sensitivities and behavioural regression.
What should I do if I think someone in my family has PANS or PANDAS?
If you have noticed a marked change in your child or a family member after they have been ill, with symptoms which match those listed above, the first step to getting help is to visit your GP and talk to them about the changes you have seen. You might find it helpful to make some notes about the symptoms and changes you have noticed, and about any illnesses you noticed before these changes happened.
In case your GP is not familiar with PANS and PANDAS, we have created this GP leaflet which is useful to help you explain the conditions, the tests they could run, and the treatments which might be helpful.
Frequently Asked Questions
How can I support my child?
The most important thing you can do is to get professional advice and assessment. It can be tempting to wait and see if things improve, or if the changes you have noticed are a phase, but PANS and PANDAS are medical conditions which need prompt treatment from healthcare professionals in order to make sure the child or young person recovers well.
What can I do to support their siblings?
PANS and PANDAS impact the whole family. Seeing a brother or sister change so dramatically, and witnessing the symptoms of PANS and PANDAS and the stress this brings to the whole household can be traumatic for siblings.
Below you can find details of some organisations who can give advice and support for siblings.
Sibs is the UK charity for siblings of disabled children and adults. YoungSibs is for young people aged from 7 to 17 and provides information and a moderated chat forum.
The charity Contact also has a guide on supporting siblings.
Over the Wall runs residential camps for siblings of those affected by serious health challenges.
How to look after yourself when dealing with PANS and PANDAS
PANS and PANDAS are incredibly tough conditions to live with for all concerned. As a parent or carer, you will naturally feel really worried about your child’s mental and physical health. It can be exhausting and can start to affect your wellbeing too.
Please try to look after yourself as well as everyone else during this time. Some ways you might do this are:
- Connect with other families who know what you are going through. You could join our private Facebook support group, or perhaps attend one of our online or in-person support groups.
Lean on close friends and family and let them help you where possible
- Try and make small pockets of time for yourself to recharge, even if it just for a short time
- Make an appointment with your GP if you think you may need support with your own mental health at this time
- If you need to talk, consider calling the Samaritans on 116 123
PANS and PANDAS Resources
Real Life Stories
PANS, PANDAS and Safeguarding
Here to Help
Feel free to reach out through our contact form or social media channels with any questions or concerns that you may have and our team will be sure to help and provide advice.
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