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. We have also a leaflet specifically for CAMHS, to help guide conversations with the service about the different needs of a young adult with PANS or PANDAS.

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.

Visit our comprehensive FAQs page to find answers to your questions about medical support and treatment for PANS and PANDAS.  

PANS and PANDAS impact the whole family. Seeing a sibling change so dramatically, witnessing the symptoms of the conditions and experiencing the stress this brings to the whole household can be traumatic for siblings. 

Our Youth Board is open to siblings aged 8-25 whose life is affected by PANS or PANDAS. With online meetings every two months, and a dedicated online platform, children and young people can find support amongst friends and PANS PANDAS UK team members.   

Here are some other organisations who can provide 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 provides a great guide to supporting siblings. 
• Over The Wall run residential camps for siblings of those affected by serious health challenges. 

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 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 chats
• 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’s just for a short time
• Read our article about reconnecting with your family after a symptom flare
• 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. You can find out about other supportive organisations here.