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PANS and PANDAS explained
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In this episode, the PDA Society begins a clear and accessible exploration of PANS and PANDAS, conditions that can cause sudden and significant changes in a child or young person’s behaviour, emotional wellbeing and functioning.
Although not linked with PDA, some of the presenting characteristics can be similar, making diagnosis and treatment difficult.
The conversation focuses on what PANS and PANDAS are, how they may present, and why they are often misunderstood or missed. Listeners are guided through common signs, including rapid onset anxiety, changes in behaviour, emotional distress and difficulties with everyday activities. The episode highlights how confusing and frightening this experience can be for families, particularly when changes appear to happen out of the blue.
Part1 lays the groundwork for understanding PANS and PANDAS, offering families and professionals a calm, compassionate starting point for recognising concerns and seeking appropriate support.
Note that PANDAS in this context refers to a medical condition (Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections). This is entirely different from the PANDA mnemonic used in PDA Society training.
Key Themes
- What PANS and PANDAS are and how they can present
- Sudden changes in behaviour, anxiety and emotional wellbeing
- Why PANS and PANDAS are often misunderstood or overlooked
- The impact on families when changes feel sudden and unexplained
Deep Diver Subscriber Episode
For those who would like to go further, Part 2, an exclusive “Deep Diver” subscriber episode, is available through our Training Hub. You can access it here: https://training.pdasociety.org.uk/pda-podcasts/
Disclaimer
The views and opinions expressed by guest speakers in this podcast are their own and do not necessarily reflect those of the PDA Society. While we aim to provide balanced and inclusive discussions, individual experiences and perspectives may vary. The PDA Society is committed to using language and terminology that reflects the preferences of PDA and autistic people, but sometimes our guests may use language and terminology which differs. Appearance on our podcast is not an endorsement of an individual, and not all of our guests will align with our position on the issues discussed.
Further sources of support and information
- PDA Society Training Hub: https://training.pdasociety.org.uk/pda-podcasts/
- PDA Society Website: https://www.pdasociety.org.uk/
- PDA Society Training: https://www.pdasociety.org.uk/support-and-training/training/
- PDA Society Support Service: https://www.pdasociety.org.uk/support-and-training/support/
External Links:
- Romy's YouTube: https://www.youtube.com/@ChronicAdvocate
- Romy's Instagram: https://www.instagram.com/chronic.advocate/
- PANS PANDAS UK: https://panspandasuk.org/
Recommended
Transcript
Introduction to the PDA Society Podcast
00:00:02
Speaker
Hello and welcome to the PDA Society's podcast. We're here to chat about all things PDA to help you understand what people with this profile of autism are experiencing and how you can help.
00:00:13
Speaker
We'll be sharing research, professional expertise and the insights of people with lived experience to help you understand PDA and have more tools to make life easier. So whether you're a PDA yourself, a family member, friend or professional trying to make a difference, welcome from everybody at the PDA Society. We hope you'll find this useful.
Guest Introduction: Romy's Advocacy
00:00:38
Speaker
Hello everybody and welcome to this podcast. My name is Sarah, I'm lead trainer at the PDA Society and I'm delighted to be joined by today's speaker, Romy. Romy, would you like to say a few words to introduce yourself?
Understanding PANDAS and PANS
00:00:52
Speaker
um Hello, I'm Romy and I'm very passionate about disability advocacy and I'm here today to talk about the conditions PANDAS and PANS as they are conditions that I've been dealing with myself but they are very misunderstood so I think it's really important to just come on here. and will make people aware of it.
00:01:12
Speaker
Brilliant, absolutely, that's great and I must admit you know I've never even heard of PANS pandas until probably about a year ago um so I'm really interested to learn more as well. So if we start off with just a bit of background really and understanding about the condition, can you explain what pandas and PANS are and how they may differ?
00:01:33
Speaker
Well, pandas and pans are neuroimmune conditions. So the immune system gets a bit confused when you have an infection and a attacks part of the brain called the basal ganglia leading to inflammation.
00:01:46
Speaker
Pandas is specifically triggered by strep infections like strep throat or scarlet fever. Whereas pans is seen as a bit more of an umbrella term because that can be triggered by pretty much any infection, viruses, bacterial infections, and In some cases, it can even be triggered by non-infectious factors like metabolic
Symptoms and Diagnosis Criteria
00:02:07
Speaker
disturbances. So PANS is a bit more complex in that sense.
00:02:11
Speaker
The diagnostic criteria does differ slightly as well. For PANDAS, i would say it's a bit more restrictive. It's stricter because you need either sudden ticks or OCD plus one other neurological sign starting before puberty in direct association with a group A streptococcal infection.
00:02:31
Speaker
So that's a very, very specific diagnostic criteria. But with PANS, it actually is and OCD or food restriction plus symptoms of two out of, I think, seven categories. And those symptoms, there's a lot of different ones. It can be rage attacks, which are involuntary outbursts of anger.
00:02:50
Speaker
There can be depression, anxiety, especially separation anxiety, which is very common in people with pandas and PANS. um academic troubles as well, like handwriting decline, decline in maths ability, developmental regression, where a person may appear to go back on milestones, a person might have mood swings, or they might have yeah urinary symptoms where they develop incontinence.
00:03:15
Speaker
And as well as that, of course, there's ticks as well. And sleep problems are very common too. So there's a lot of different things that you may tick off. And to be diagnosed with PANS, there actually isn't an age restriction like there is for a PANDAS diagnosis, because even adults can develop PANS, which sounds strange because the P in both PANDAS and PANS stands for pediatric.
00:03:38
Speaker
But the National Institute of Mental Health actually found out that some people do develop it in adulthood. So they kind of, although the names haven't been changed, they they change the criteria. So you technically can get diagnosed with an adult onset.
00:03:51
Speaker
And as well as that, it doesn't mention a specific infection because it can be pretty much any infection. Wow. And actually, that's a really good point. What does PANS and PANDAS actually stand for in the mnemonic?
00:04:05
Speaker
So PANDAS is paediatric autoimmune neuropsychiatric disorder associated with streptococcal infection. And then PANS is paediatric acute onset neuropsychiatric syndrome.
00:04:17
Speaker
Wow. Okay. And when were these sort of first noticed or when when were they, well, this was probably the wrong word, but when were they first acknowledged? Well, pandas was discovered in the late nineties by Dr. Susan Sweden. She was just doing research on childhood mental illness and noticed that connection between strep and the onset.
00:04:38
Speaker
But then I believe it was the 2010s that parents actually came together and said, We've seen this, but with infections other than strep. And that's when PANS was born, really.
00:04:49
Speaker
But interestingly, reading back on the history, I'm a bit of a nerd. But if you I was reading about Sydenham's Crea, and that is also another condition that's triggered by strep that causes inflammation in that part of the brain.
00:05:02
Speaker
And historically, haven't seen you show that a lot of people with that did also have OCD as well. So it's been around for a very long time. It just didn't have a name until relatively recently. Wow. Okay. So relatively new, really. Well, very new.
00:05:15
Speaker
Although yeah I do sometimes think that the 1990s was only about five years ago. still So yeah. Okay. So as a sort of ah a parent or a family, um what types of symptoms do the families typically notice at onset?
00:05:31
Speaker
Well, sometimes it is quite abrupt. It can appear to come out of the blue, though in some cases it's more sub-acute, so it might build up and then explode. But the symptoms are usually OCD is a huge one. But OCD is actually a really big thing. A lot of people think that it's just about being tidy or clean, but it's actually not. It can cause very debilitating, uncontrollable thoughts that can cause person a lot of distress.
00:05:57
Speaker
and it you know if it's a child they they might not feel able to talk about them but you may just notice that they seem very withdrawn very anxious and they will have rituals and these rituals can be things like uh difficulty dressing they might um have to tap their clothes on the floor they might struggle to walk over certain areas of the floor in the house they might uh flick light switches on and off there's pretty much anything can be an ocd ritual um hand washing excessively, not just a little bit, but it can be excessive to the point where it actually breaks the skin, um anything like that. But also interestingly, sometimes OCD rituals can be hidden. um A person may seem very distracted because they're doing rituals in their mind, kind of firming over the thoughts, trying to get rid of them.
00:06:45
Speaker
So you'll often see a lot of anxiety in rituals, but also sometimes um a complete change in a person's behavior and demeanor like they might be the most confident happy person you know but suddenly they seem to be very angry and sad and that can come as a real shock to a lot of families because it's just a major change
00:07:12
Speaker
yeah and and that major change does that fluctuate or Yeah, so you you you might, you know, see those behaviors or that personality change for a short period of time, but then they go back to the way they were before potentially, but then can the distress behaviors come back again?
Symptom Fluctuations and Challenges
00:07:31
Speaker
Definitely. um It's often said that most PANS-PANDAS cases have a relapsing remitting course. So a person may have a major flare and then appear to go back to normal, you know go back to their baseline. And that was always a a strange thing for me. OCD was labeled atypical before I found out that I had PANS because no one could figure out why I could go months without OCD and then have months with really, really severe OCD.
00:07:56
Speaker
um Although in some cases, people do have a chronic static case where the symptoms are just there all the time. um And also symptoms can actually change in each flare, which can make it even more confusing because a person may be experiencing OCD as their main symptom in one flare, and then they may experience tics and developmental aggression also in another. So it can change a lot.
00:08:21
Speaker
Absolutely. and And I guess some people who are listening to this podcast, watching this video version, they're probably thinking, well, why is the PDA Society talking about pandas and pams? I know that there's, you know, been some overlap in terms of symptoms could you or or presenting behaviours. Are you able to just talk us through some of the similarities?
00:08:44
Speaker
Yeah, well, a lot of Pans Pandas families do actually suspect PDA at first. mum did um because the anxiety can make person seem quite rigid. And unfortunately, defiance is said to be a trait of pandas and pans, although I don't really like that term because, you know, when you say defiance, people think you're doing it on purpose.
00:09:07
Speaker
And the thing is that actually it's usually anxiety based or it's a processing issue. Like there's so many reasons. um But you know, a person with pandas and pans may experience what looks like defiance.
Overlap with Autism and PDA
00:09:20
Speaker
um So yeah, there's a lot of overlap and it's actually interesting. I don't know why this happens, but in flares, a lot of people do experience demand avoidance. I do. i will.
00:09:35
Speaker
I'll have a simple task that I have to do but I feel like there's a block to me doing it. So I have to do something else. And the other thing that i end up doing is so much harder. So it doesn't really make much sense. And I do also struggle with sleep just because sleep is a demand. So, you know,
00:09:52
Speaker
There is a lot of overlap there and I honestly, I don't know why, but I do find it really, really interesting that there's that overlap, but it can also co-occur with autism. PDA is ah sort of like a presentation of autism. I do have both autism and PANS, so it can also overlap as well. You can have both.
00:10:11
Speaker
And I think you've made the point really, really well there about it being a case of can't, not won't. So this isn't deliberate defiance. This just that that stops you being able to do it. You know, that's what we hear from families all the time and from PDAs themselves when they, you know, they say it's so frustrating. They want to do something potentially, even things that they want to do and they just can't. represent Yeah.
00:10:33
Speaker
Yeah, absolutely. So um why is it important then to actually get a diagnosis of Panda and PANS? right Well, a diagnosis, um the most important thing I'd say is it opens doors to treatment and management strategies because The symptoms can be so debilitating and, you know, a person can experience the most intense anxiety, depressive symptoms, even psychosis during a flare.
00:10:59
Speaker
The tics can be painful and extreme. The rages can be horrific and dangerous. So treatment is needed to address the brain inflammation so that a person can be happy and safe again. um And of course, a diagnosis is needed for that because you need to know what to address because it isn't managed in the same way as a you know classic mental illness. It isn't managed in the same way as a neurodevelopmental condition. It's its own.
00:11:24
Speaker
It's autoimmune in most cases. So it needs its own treatment. But as well as that, it does make you more mindful of avoiding infections that can trigger flares. um So, for example,
00:11:37
Speaker
You know, if a friend is ill, you can just let them know that, oh, if you're ill, can you let me know so that, you know, I don't catch it and get into a flare.
00:11:48
Speaker
But as well as that, it helps because there are also conditions that can co-occur with pandas and pans. And having a diagnosis can also make you aware those other conditions as well, which can then lead to further explanations.
00:12:00
Speaker
So it's about to having that understanding so that you know you can get the appropriate treatment.
Diagnosis and Treatment Approaches
00:12:05
Speaker
Yeah. OK, so so suppose a question that was asked was, is it curable or is it a lifelong chronic condition? and Well, it really depends on the person, because there are some people who, when they are diagnosed early on,
00:12:19
Speaker
they, hey, they appear to make a huge improvement and then they may flare again at another point. But after a a few months or even years of treatment, there are some people who don't seem to relapse again, which is amazing. And they seem to just go on with their lives. But then there are other people who, like myself, went undiagnosed for a very long time and just had no idea what it was.
00:12:44
Speaker
And because eight it went undiagnosed for so long, it becomes slightly harder to treat. And also um some of us, most people with pandas and pans respond to first line treatments, but some of us don't. Some of us do have more complex things going on and co-occurring issues as well.
00:12:59
Speaker
So that's what it is. For me, it is more lifelong and chronic, but for some people if caught early, they can live a relatively normal life. Yeah. And I'm putting you on the spot a bit here in terms of statistics. Do you know roughly how many people are diagnosed appropriately early on or compared to those who, you know, it's a bit of a perplexing presentation and, you know, they they sort of get left until a later diagnosis? Yeah.
00:13:27
Speaker
Unfortunately, i don't know if there are statistics on that because for a lot of people, um they never get diagnosed. For a lot of people, they just spend their life diagnosed with something different, like classic OCD Tourette's, um emotionally unstable personality disorder, avoidant restrictive food intake disorder. There's a lot of different diagnoses that people are given.
00:13:49
Speaker
And it does make you think how many people are in psychiatric wards being treated for a mental illness when they actually have an autoimmune brain condition. So I'm not actually certain on the statistics, but a good thing is that with the increase in awareness in recent years, I have seen more people get caught early on, which is really, really hopeful.
Romy's Late Diagnosis Journey
00:14:10
Speaker
Absolutely. Yeah. So what happened in terms of a breakthrough in you getting your diagnosis? You know, you said you were relatively late getting a diagnosis. What was the breakthrough that led to you getting the formal diagnosis? It was it was when I was 17 that we realised that there's something strange going on here because.
00:14:30
Speaker
I had grown up with very very severe OCD and everything but for a couple of years by that point my tics were virtually non-existent and so was my OCD until at 17 very quickly I developed severe OCD again i developed severe tics again i developed a load of new symptoms like depersonalization derealization loss of coordination loss of sensation severe ADHD like traits, depressive symptoms, delusions, like it was a really long list of things.
00:15:01
Speaker
um And at that point, it was like, this is weird, a 17 year old isn't supposed to develop all these things seemingly overnight. So at that point, we realized that the only thing it really could be is pandas or pans. And I had a throat infection at the time, which made it kind of clear.
00:15:18
Speaker
um But then it wasn't actually until a while after that, but I got even more solid answers. um I found out that I had Lyme disease as well, which was contributing. wow There was a lot of things. um So that required treatment. The Lyme specialist said I met Pan's diagnostic criteria.
00:15:34
Speaker
Then I saw another specialist who said they thought I might have mast cell activation syndrome, which is a condition that also causes a release of lots of inflammatory chemicals that can worsen pans and they suspected like pans pandas as well so there was actually a lot of things going on that were contributing as well wow and and are the specialists in this in this field or you know do you if you're an adult for example do you get referred to a general physician do you get referred to an autoimmune specialist how does it work
00:16:06
Speaker
It's very difficult, I must
Treatment Accessibility Issues
00:16:08
Speaker
say. um Unfortunately, there's not really many and NHS specialists on pandas and pans. Some people are lucky if they live in a specific catchment area, they can see a doctor who's a specialist, but there's not many in the UK.
00:16:21
Speaker
um So sadly, most people are forced to go private and most of the doctors specialize in children's cases. um And then for adults, there is a clinic for adults, but again, there's not very many specialists. So that's a big problem.
00:16:36
Speaker
But I mean, and NHS healthcare care for adults with PANS, PANDAS, it just doesn't exist, unfortunately. um is it's really, really difficult to get the care that you need. And it's not right because so many people are just left to suffer, children as well, because obviously even the pediatric specialists, some of them are under the NHS, but the treatment they can give under the and NHS is limited because there currently aren't any nice guidelines for PANS or PANS. So the NHS don't really cover the treatment. So it's definitely a source of stress for many people.
00:17:08
Speaker
You mentioned before about first line treatments, I presume the second and third line treatments. What does a first line treatment consist of? Usually it's antibiotics is usually the most important thing to a eliminate the triggering infection.
00:17:24
Speaker
And B, antibiotics actually have some immune modulating properties as well. So even when an active infection isn't found, people often do see improvements still. um Ibuprofen is usually recommended. like Don't do that without a doctor because like it can harm the gut. You have to do it for like a certain period of time. ah But some people find improvement with that.
00:17:47
Speaker
For some people, it's antihistamines because, um you know, histamine can also um cause inflammation. So there are treatments that are even over the counter that some people are recommended to use by the doctor and antibiotics. so That's usually what's seen as the first line.
00:18:05
Speaker
Yeah, and then i suppose more resistant cases or more severe flares. What what happens after that? Is it sort of steroids or? Steroids are sometimes used. um They'll often do a steroid burst. Some people do get that straight away if it's particularly severe.
00:18:19
Speaker
um but that can help calm down the immune system a bit but some people have negative reactions to those so they aren't really an option for everybody because some people find that they worsen the rage or it can if you have a chronic underlying infection then because steroids reduce the immune function that cut that's not great if you actually still have a chronic infection and boom boomo But there are other at other treatments as well, but they are difficult to access. But in places like America and Canada, they often use intravenous immunoglobulin.
00:18:51
Speaker
um So it's lots of antibodies pulled from thousands of blood donors. And that is pect through an IV to try and sort of reset the immune system, train it on how to not attack the brain. and that There was one hospital in the UK that I was aware of that did that for Pandas and Pans, but it wasn't under the NHS. Most people do have to go abroad, which is really unfortunate because it's very expensive for people.
00:19:20
Speaker
There are some... Yeah, even just getting abroad. i know. um There are some other treatments that are sometimes used, not necessarily as often, but one of them is low-dose naltrexone.
Alternative Therapies and Support Groups
00:19:31
Speaker
Naltrexone is usually used for addiction, but in low doses, it can actually reduce autoimmunity and inflammation. so that's what I take. um And it is a bit helpful. It does help um to an extent.
00:19:43
Speaker
So some people use that. And in the most severe cases in places like America, it's not in the UK yet, but they use plasmapheresis where they just take the antibodies out of the bloodstream. boom Yeah. Wow.
00:19:57
Speaker
So if you if you know somebody was experiencing the flare, what is actually happening to the body and the brain at that point? So. what What it is, is there are a bunch of different antibodies associated with pandas and pans. um they The main ones I think attack dopamine receptors, but there are others as well.
00:20:19
Speaker
Trying to remember them. I think there's anti-dopamine receptor one, anti-dopamine receptor two. want to say camcanase. there's There's a lot of different ones. And those antibodies attack the basal ganglia, which is right in the middle of the brain. And the basal ganglia is responsible for movement and movement planning.
00:20:40
Speaker
And it's the part of the brain that's also associated with causing OCD, which is why pandas and pans cause severe OCD. It's part of the brain also linked to emotional regulation and sometimes muscle tone as well, which is why some people with pandas and pans experience low muscle tone as well during flares.
00:20:59
Speaker
Right. Okay. Yeah. and So with that, you know, typically if you've got poor muscle tone tripping over, just being more clumsy, Well, it really depends. It's not a particularly common symptom, but I do know some people who have it. It's one of my bigger ones, but it can make you very, very fatigued because you're putting in so much more effort just to move around. It can make it feel like your muscles are floppy, like <unk>re they're weighing you down. You can struggle to hold your head up or even sit up for long periods of time. And this isn't a common symptom, as I said, but it can happen. I've seen it for quite a lot of people.
00:21:38
Speaker
Mm-hmm. And what sort of support is out there for families um with with family members who who are living with Pandas and Pans? Well, I think a good place to start is the online groups run by places like PansPanders UK and other organisations, because that does allow you to connect with other families who have been in the same position dealing with this condition and looking for answers. um Woohoo!
00:22:06
Speaker
Hey, sorry. ah Therapy can sometimes help cope with the trauma of dealing with it because for the individual it can be traumatic because they have changed and they are now in this battle of trying to be taken seriously and access treatment.
00:22:20
Speaker
For families, unfortunately, it can be traumatic as well because their child has changed, their child is really, really, really struggling. with all of these symptoms that take hours out of the day, the OCD rituals can take hours. um The young person can lose the ability to do daily tasks like dress themselves, walk upstairs, that was my experience for four years, I couldn't dress myself.
00:22:42
Speaker
um You know, it's very disabling. And the family unfortunately might feel as if they're walking on eggshells because a rage can hit at any moment and it can be destructive.
00:22:54
Speaker
You know, I would run away from home. i would throw chairs at people. It wasn't great. um So obviously it can be a source of stress for everyone. So some people do find therapy helpful to process everything that's happened after a flare.
00:23:09
Speaker
But yeah, I say mainly actually connect to other people who've been there through groups and things. And we'll we'll put the link to the charity PANS Pandas UK as well into the show notes so people can can access that as well. as Well, that was just so interesting. um That was just a whistle-stop tour into the world of pandas and pans. And thank you so much, Romy. It's been absolutely fascinating.
00:23:36
Speaker
And I don't think you're a nerd at all. I'm dying to know more about it now and it doesn't even affect me or my family. So, so yeah, let's hope we can raise awareness and, and get, you know, the support for families that they also, you know, desperately need really. um And again, it's been fascinating seeing, you know, why pans pandas can potentially get confused or muddy the waters with PDA as well. So thank you so much for your time. Very much appreciated.
00:24:04
Speaker
Thank you for having me. Thank you. And I do hope that this information can help people. And there is also a lot of other information out there on Pans Pandas UK and other organisations as well. So definitely look into that if you're interested.
00:24:16
Speaker
Brilliant. Thank you.
Conclusion and Additional Resources
00:24:17
Speaker
So if you want to hear more from today's special guest, then there is a longer version of this podcast available over on our training hub. Sponsors of our training hub make it possible for us to create and put out this podcast for everyone for free.
00:24:31
Speaker
As a thank you, they get free access to all recordings and self-guided training on our training hub. Thank you, subscribers, for your generosity. If you'd like to become a subscriber, there's a link in our show notes.