Ask the Experts
Ever wondered how medical experts explain what PANS and PANDAS are, why they are tricky to diagnose, or if recovery is possible?
PANS and PANDAS are complex. It can be very difficult for people living with the conditions to understand the symptoms. That’s why our youth board decided to ask a panel of international experts some questions aimed to help others like them understand PANS and PANDAS a bit better.
Although this short video, and the answers below, are aimed at children and young people, these resources can be really helpful for people of all ages and professions to understand a bit more about PANS and PANDAS.
Huge thanks to the PANS PANDAS UK Youth Board and also to the doctors who gave so generously of their time and knowledge.
Meet the experts:
Dr Kiki Chang
Hi, my name is Kiki. I am a child, adolescent and adult psychiatrist in private practice in Palo Alto, CA, United States of America. I want to spread the word about advocacy for PANS and PANDAS. My goal is to get it to be a more validated and accepted diagnosis, or spectrum of diagnosis, so that it doesn’t get missed, misdiagnosed or not treated correctly.
Nurse Practioner Amy Smith
I’m Amy. I’m a nurse practitioner and my office is in California. My son developed PANDAS in July of 2006, about three months after he had a strep infection. He is now 28, he is doing great and I am so proud of him.
My medical practice is dedicated to treating children with PANDAS and PANS, and their families. It is such a blessing for me to try and help untangle some of the confusion, figure out what’s going on and get people well.
Dr Vicky Queralt
Hi, I’m Vicky. I’m based in the UK. I’m a clinical psychologist and also a mum! In my job, I help children, young people and their families to understand more about their thoughts, feelings and behaviours.
We work together to find strategies and ways of coping for the different challenges they might be facing in their life.
Prof Russell Dale
Hi, my name is Russell. I’m a Professor of Paediatric Neurology. I work in Sydney, Australia, at the Children’s Hospital of Westmead and the University of Sydney.
I’ve been interested in neuroimmunology and autoimmune neurological conditions, and now I’m focusing on the role of the immune system in neurodevelopment and psychiatric conditions affecting children.
Prof Rajat Gupta
Hi, my name is Raj. I am a consultant in paediatric neurology at Birmingham Children’s Hospital. I would like to thank the Youth Board for sending me these questions, they are excellent.
PANS PANDAS UK Youth Board
We are a group of children and young people from across the UK, aged between 8 and 21 years old, who work closely with PANS PANDAS UK to drive for positive change for other young people and families affected by PANS and PANDAS.
Our Youth Board pageQuestions from the youth board:
I have PANS or PANDAS, will I get better?
Amy says… People get better from PANDAS and PANS all the time, and there is no reason that you can’t. So even if you don’t know how that can possibly happen and you’re right in the middle of being very confused… you don’t like what’s happening, you don’t like how you feel… just know that if you just keep going, and you follow the science, that can help you recover your health back and help your brain get itself all cleared out. So do not give up.
Russell says… It might take longer for some patients, but it does not mean that you won’t get better.
Vicky says… With the right treatment the immune system can work again properly. It can stop hurting the brain and go back to protecting the body. Being well again and feeling better can definitely happen.
What caused my PANS or PANDAS, is it my fault?
Vicky says… Our brain is the control centre for our body. It helps us think to feel and move and do everything we need to do. With PANS and PANDAS, the immune system has got confused and isn’t working properly. This can mess up all the different jobs the brain has to do, and the brain does so many things! This then make someone feel and behave and think very differently, often very suddenly. Remember, it is not your fault, and there is help and treatment available to make things better.
Russell says… Sometimes there is a family history of OCD, tics or neurodivergence, or there can be an increased rate of autoimmune disorders or inflammatory conditions in the family. These could all mean that a family member’s immune system isn’t regulating itself correctly, and they might have a different response to infections; like developing PANS or PANDAS.
Kiki says… Sometimes, OCD, anxiety or some autoimmune disorders can run in the family, which might make you more vulnerable when an infection, like strep, causes inflammation. This is not something that you have caused yourself.
Why does my condition make me feel so anxious?
Amy says… Your brain is inflamed and swollen, and our brain is associated with what we think and how we feel. It can make us think and see things that aren’t really there and can make us have repetitive thoughts.
Also, when you are feeling so poorly, you will probably also feel worried and stressed about what is happening. You might not feel independent anymore, or want your family around, or you don’t want to leave the house – all things which aren’t normal for you. I think you will feel anxious because you don’t feel like yourself, and you don’t know what is going on!
Vicky says… PANS and PANDAS can make you feel anxious because they can affect part of the brain that usually helps you to feel calm and safe. As if your brain’s warning system has become really sensitive, suddenly everything seems more stressful and overwhelming. Your brain might start thinking that everyday things, like being offered a glass of water, seeing a ladybird, or getting in a car are really big dangers, so you start to feel nervous and scared.
The good news is that with the right treatment and support, your brain’s warning system can start to work normally again. This means you will feel less anxious, you will start to feel calmer and more like yourself again.
Can PANS or PANDAS affect siblings?
Vicky says… If your sibling has PANS or PANDAS, you might be feeling all sorts of different emotions. It can be scary or upsetting to see them so poorly and behave so differently. You might at times feel quite lonely, or angry, or maybe you just feel really numb and that you’re not sure how you are feeling. I want you to know that these feelings are completely understandable, and it’s very normal to feel this way.
Russell says… PANS and PANDAS can have an effect on siblings too. We shouldn’t underestimate how important a hug is, just showing that you care, acknowledging that it is difficult. That can be very therapeutic.
Explaining the conditions:
How can I explain PANS or PANDAS to my friends and family?
Vicki says… How I think about it is that PANS and PANDAS is the name of an illness, or condition, where the immune system gets confused and attacks the wrong thing in the body. This then makes someone feel and behave and think very differently, often very suddenly. That’s why there are so any different symptoms.
Raj says… I generally say that PANS and PANDAS are triggered usually by an infection of some description. Your immune system tries to fight off that infection and in order to do so it produces antibodies which attack the thing that’s causing the infection. Unfortunately, those antibodies also cause swelling [inflammation] in the brain, and that can cause changes in the way that you think, your behaviours and potentially cause movement disorders such as Tics.
Kiki says… I explain that your immune system overreacts to something, and sometimes that can lead to inflammation. If the area of the brain that affects things like your mood, movement, anxiety, or attention gets disrupted by inflammation, you get lots of different symptoms.
Amy says… PANS means that there is a physical Illness that’s affecting the brain’s ability to work properly to do its job. making somebodies behaviour, or feelings, or their ability to think the way they normally think. It’s not a psychiatric problem, or a thinking problem; those are symptoms. The cause is something visible that is happening in the brain, when the brain gets swollen or infected. In PANDAS, it is Strep that causes the swelling. Your body is trying to heal, but it’s kind of missing the mark.
Russell says… I would start by explaining that everyone’s body can affected by our immune system, and our brain is part of our body. With PANS and PANDAS, fairly normal infections, like colds, sore throats or tonsillitis can trigger an abnormal response in the brain.
How can I explain PANS or PANDAS to younger children?
Amy says… My son says this to his friends:
‘When I get an infection, my brain becomes inflamed and I can’t act or think quite like myself. I take medicine for it; it helps and one day it will go away forever’.
If you’re a little person and you want to explain it to your friends, you could say:
“I had an infection and it made my brain, my thinking, change… and I’m taking medicine for that, and I’m going to be fine.”
Vicky says… You might say: “I have a lot of worries at the moment that make it hard for me to be myself and meet up as often, I get tired a lot, but I will get better”
Or “I’ve got an illness that has started to hurt part of my brain, which is making it harder to go to school, or meet up. I will get better!”
Diagnosing PANS or PANDAS:
Why are these conditions so difficult to diagnose?
Vicky says… It is tricky for doctors because the symptoms can look like other problems, so it can be tough for them to know exactly what is wrong. There isn’t a simple test to find out if someone has PANS or PANDAS, so doctors need to do lots of different tests to rule things out; and that can take time. We also looking at any big change in the way someone is behaving or feeling, because every individual is unique.
Raj says… At the moment, we have not been able to identify a biomarker, or a test, to confirm something is PANS or PANDAS. Most of the tests we do are actually to try and rule out other possible conditions with similar symptoms.
Amy says… There are different reasons for people to get PANS or PANDAS, and there isn’t one medical test, so that makes it challenging. It is complicated, can take a lot of time and can involve seeing lots of different medical people. Medical technology is still evolving, and the science isn’t perfect yet.
Kiki says… The brain is hard to see and test, and that makes it harder to diagnose. Many specialists know their medical area well, but don’t understand how different areas of the body can interact. If they can realise that everything is connected, they can understand that your symptoms might be caused by a medical condition, rather than stress, for example.
Why do some doctors question the diagnosis of PANS or PANDAS?
Vicky says… Not all doctors know about PANS or PANDAS, so it often takes a doctor who knows a lot about these conditions to figure out the right diagnosis. But, awareness is growing and there are doctors working really hard to learn more about the conditions.
Russell says… I have worked with people with Tourette’s and OCD for a long time, and I think that people with PANS or PANDAS present very differently. But some doctors who don’t have this experience might not understand the differences. Or, they might not have heard about PANS or PANDAS, so they don’t know that these conditions exist. But I think improved research and medical recognition will change this.
Treating PANS or PANDAS:
What treatments are available?
Vicky says… There are different types of treatments and support that can help, so you will probably see different people depending on what you need to get better. These treatments are like special tools that help your brain and body get back on track, so that you can feel better and do the things you enjoy again.
One of the main treatments is medicine, and a doctor who really understands PANS and PANDAS will talk to you about this and find the right one for you. Another type of treatment is Talking Therapy, where someone will offer you support by listening to you and helping you to understand your thoughts, feelings and behaviours better. It can help you think of strategies to help you cope and feel calmer, so you manage some of the difficulties you’re experiencing with PANS or PANDAS. Talking therapy can take time, but with practice and determination, life will start to feel easier. You will get better, with the right treatments and support for you and your family.
Kiki says… The treatment depends on what is causing the condition, that’s why we test first. If it is an infection, we can treat that with antibiotics, inflammation can be treated with anti-inflammatories and the immune system can be helped with specific immune modulating treatments.
If I don’t get treated for a long time, does it mean I won’t get better?
Amy says… A lot of people I know didn’t get treated for a long time. It took years to treat my son, and he is completely better . I know children that were treated for twelve years, that are better now. It takes a lot of focus and persistence, so don’t give up, keep going.
Russell says… I think it is true that people who are treated very early are more likely to respond to treatment more quickly, and more completely. But this does not mean that if you don’t get treated for a long time, you won’t get better. We have patients who have had really severe symptoms for many years, and we’ve been able to treat them.
Is anyone working on future tests or technology that can help people with the conditions?
Kiki says… We are seeing really, really good results with some of these treatment trials that are coming out. We just need more recognition and more financial support, so that further research can be done and we can continue to find the best treatments. I believe the recognition has got so much better in the last ten years, so I’m very, very hopeful.
Raj says… Ongoing research is happening in the UK and abroad. I’m hopeful that we will soon identify a biomarker, or a test, that can tell us if someone has PANS or PANDAS. Once we have that, I hope that acceptance from all health care professionals will be a lot higher.
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