Natasha Mitchell: Hello there, welcome to All in the Mind. Natasha Mitchell joining you on ABC Radio National, glad to have you on board. Today on the show, those imps in your mind - we all have them, but, fuelled by extreme anxiety, every day obsessions and compulsions can go too far.

Montage of Morris's Story: Every morning I spend an hour in the shower. Lately I've started using Ajax or Flash to wash my hands and arms. I have scrubbed my hands so hard and for so long that they're now always red and raw and sometimes they bleed.

Eating breakfast is a nightmare - it takes me about half an hour to wash all the crockery and cutlery before I use it. I get up at six every morning so I can get through the washing and showering without being late for school.

I can't use the bus because it just seems full of dirt and germs and by the time I got to school I would have to wash again. I don't eat at school because I worry about germs getting on my food.

I have to shower for an hour before I go to bed too, so it's usually about 1.00 in the morning before I get to sleep - so I'm always tired. I used to get good marks at school, until last year when all this started to get out of control. Now I can't seem to do anything right.

So many things seem to set off these crazy thoughts about catching some dreadful disease and contaminating my family. I worry about making my mum really ill and that she would die. I can't bear the thought of being responsible for that.

I've lost all my friends at school - they call me 'Crazy Mo' and laugh at me. I can see why. It seems to me it won't be long before I just have to leave school - I can't see any other way out of it. My mum cries a lot these days, and dad shouts a lot - mostly at me. I don't know what to do. I just can't help what I'm doing.

Kathryn l'Anson: The idea of having a label can be quite difficult in that it's a mental disorder - all the connotations of that. But on the other hand, these kids and families are grappling with something which they don't understand which seems quite bizarre and incomprehensible. And then to find that it is an actual thing, that a lot of kids have it, that it has some explanation, and that there is treatment for it, can have a significant impact in making the child feel some sense of normality.

Natasha Mitchell: Psychologist Kathryn I'Anson heads up the Anxiety Recovery Centre in Melbourne where she runs an early intervention program for young people diagnosed with what's dubbed 'Obsessive Compulsive Disorder', because if left unchecked life can really unravel in adulthood.

David Castle: One patient I had who had become so concerned about the contamination that she had to restrict her oral intake. So she hardly ate anything and used to drink just Lucozade, because if she went to the toilet it would be some six hour ritual associated with going to the toilet and then the whole decontamination process which occurred around that. She had a very circumscribed area of her home which she saw as safe, which was actually in the hall outside the bathroom. She would lie there basically her whole day and night listening to the radio. But other than that she did essentially nothing. And she eventually came into hospital for treatment, and for her to actually go through the ritual of washing herself - which she hadn't done for two years, weirdly, because her concern was with contamination - it took her two days to do the washing rituals.

Extraordinarily disabling. I think they are some of the most disabled people I've ever seen in my clinical practice over quite a few years now. So this is not a trivial problem.

Natasha Mitchell: David Castle, Professor of Psychiatry at the University of Melbourne and St Vincent's Hospital. And later in the show a provocative and controversial theory as to the origins of Obsessive Compulsive Disorder. Rather than a psychological cause could OCD - in some children - be triggered by a common case of strep throat, a bacterial infection ubiquitous to childhood?

Susan Swedo: It's certainly a paradigm shift, as one of my professors told me, 'it's the difference between believing your data, or believing the dogma of the time'. It has been somewhat controversial a little bit like the Helicobacter story there from Australia for ulcer disease. People were somewhat resistant to thinking that this disorder could be caused by something other than a psychological trauma. But it's not without precedent, in that syphilis was a bacterial infection that gave all kinds of psychiatric symptoms. And Lyme Disease is also known to have psychiatric sequellae. So there are a number of different bacteria and viruses that can give rise to mental illness and behavioural problems.

Natasha Mitchell: Dr Susan Swedo from the prestigious National Institute of Mental Health (NIMH) in the USA. And more on her compelling findings in a moment. As you'll hear though, for most, Obsessive Compulsive Disorder is not caused by a strep infection in childhood.

For this mother, it was her now 16 year-old daughter's anxious temperament that was a key trigger.

Mother: We first became concerned probably when she was in Year 5. We just noticed some things that were actually sort of happening, but because she is of an anxious nature we put it down to that anxious nature.

Natasha Mitchell: So she's a wonderfully intelligent girl, a real bright spark.

Mother: Very much so.

Natasha Mitchell: But had she always been an anxious child?

Mother: Absolutely, from day one.

Natasha Mitchell: What happened in grade 5, how did her behaviour start shifting that made you think this isn't just her being anxious or a perfectionist?

Mother: Well, she needed constant reassurance and she would particularly at night, and, looking back on it, we would recognise what she was doing now, but she would want us to talk to her a lot. What it was, was to try and actually distract her mind so she could get to sleep. But she would be very anxious about going to school on the Monday after the Sunday, and she'd be anxious about things like her birthday because she needed that all to be right. High levels of anxiety about those sorts of things.

Natasha Mitchell: But she started to engage in repetitive rituals and behaviours that we've come to understand to be associated with Obsessive Compulsive behaviours.

Mother: Basically in year 7.

Natasha Mitchell: And what was she doing?

Mother: The repeating came after we recognised that she was actually very unhappy. She would be walking down a path at school and she would hop from one side to the other, or she'd go in the gate and then out of the gate. Or she would be doing things like repeating cleaning her teeth, or just doing things over and over again, and she had fears that were just abnormal-type fears.

David Castle: Well Obsessive Compulsive Disorder is a disorder which is characterised by obsessions and compulsions, obsessions being intrusive thoughts which people recognise as their own thoughts which usually cause them distress. And that distress leads onto compulsions which are really an attempt to alleviate that distress.

Natasha Mitchell: For many people who are experiencing obsessive compulsive disorder in their adult life it all starts when they're very young. And I'm interested to know, in fact, that it's sort like a magical thinking for children, it's like superstition gone awry.

David Castle: It is a bit like that because usually the harm which you believe will befall somebody if you don't do your rituals are related to other people. So for example, checking that the power has been switched off - you're concerned that the house will burn down and will kill other people. Or that if you don't do things in a certain way, or a certain sequence, then harm might befall others, usually family members. In children it's actually quite common to have what is called 'magical thinking' and some of that is totally innocuous and harmless and usually shouldn't concern parents that their children are developing a disorder as such.

I think they should be concerned that it might be becoming problematic if it's becoming distressing to the individual or excessively time consuming. But a lot of kids go through phases of having favourite colours, favourite numbers, those sorts of things, doing things in certain sequences.

Natasha Mitchell: Obsessing about them.

David Castle: ...and not standing on the cracks of the pavement which is a classic. That's not Obsessive Compulsive Disorder - but sometimes can be a harbinger.

Kathryn I'Anson: Yes, OCD is usually something that builds up quite gradually. It might be triggered by something which starts them thinking 'oh well, you know, that's a bit scary or that's something which could hurt me or hurt my family'. With OCD there's a knowledge that these thoughts and behaviours are excessive and somewhat irrational, but there's a feeling that they can't control it, they have to do these things or the thoughts won't go away. So, there's just this general feeling of not being in control and being quite scared and anxious all the time.

Natasha Mitchell: Psychologist Dr Kathryn I'Anson, and before her Professor David Castle.

But let's head back to those controversial findings about a possible cause of some cases of OCD. The suggestion is that for a small subgroup of children - not adults - who develop sudden signs of obsessive compulsive disorder, the trigger could be an everyday strep infection.

It's been given the friendly acronym of PANDAS which stands for, it's a mouthful, Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococci. For Dr Susan Swedo the possibility has held her focus for over two decades.

Susan Swedo: Why have I persisted? Because we didn't set out to find the PANDAS subgroup - it sort of appeared to us. Actually one of the mums, she had three sons, her oldest had Tourette's Syndrome and the family joke was anytime his tics got worse he'd better get a throat culture because he was going to end up having to stay home from school with the strep throat the next day.

When her youngest son started flailing about and having these very complex motor behaviours he was initially diagnosed with Sydenham's Chorea but we later determined that he actually had tics and obsessive compulsive symptoms. And he was sort of the index case, and if we hadn't listened carefully to his mum talk about the fact that her older son always had worse tics when he had Strep, we probably wouldn't have been prepared to make the observation.

Natasha Mitchell: Dr Susan Swedo is a senior investigator at the National Institute of Mental Health (NIMH) where she heads up the Paediatrics and Developmental Neuropsychiatry branch.

A condition called Sydenham's Chorea was a striking starting point for her. It's a powerful neurological response to acute rheumatic fever caused by a particular strain of streptococcal bacteria. Kids who cop it suffer involuntary jerky movements of the body and often strong obsessive compulsive symptoms. Dr Swedo and colleagues noted powerful similarities to a group of children with what looked OCD. In both cases the likely mechanism is intriguing: our body's immune system turns against itself as well as the Strep infection.

Susan Swedo: We found a group of kids with OCD in whom their symptom onset and course was very different than usual. Typically children with OCD sort of have a mild case of it to begin with, just a little bit of worries, a little bit of concerns, they might have to do things a few times, or do it in special ways, and those gradually build up over time.

In the PANDAS sub group the kids actually have a very abrupt, almost overnight, onset of their symptoms. And they go from being perfectly healthy to completely incapacitated within 24 to 48 hours. And then their symptoms are very severe for several weeks or even a few months and then they taper away and they disappear and then the next time that child gets a strep throat infection, they come back full force again. So that saw-toothed, episodic course was what distinguished the PANDAS subgroup from other kids with OCD.

Natasha Mitchell: How many children have you seen?

Susan Swedo: We've seen several hundred at the NIMH, other institutions have seen dozens and hundreds more, and some estimate that about 1 in 10 children with Obsessive Compulsive Disorder (OCD) will meet the criteria for the PANDAS sub group.

Natasha Mitchell: And how robust is that figure? Because certainly in Australia people aren't as familiar with this possibility for Obsessive compulsive Disorder.

Susan Swedo: Yeah actually Australia is one place that would be really interesting to go and do these studies because one thing that we know to be true is that you have to have the wrong kind of Strep in the wrong kind of child. So that only about 1 in 20 families would be susceptible to rheumatic fever, for example. And when you treat as aggressively as we do in Australia and the United States for strep, you don't end up with much rheumatic fever.

Natasha Mitchell: Are we talking about - could it be that some adults living with obsessive compulsive disorder have been infected way back in their childhood days with Strep?

Susan Swedo: We think that some of them may well have been. In fact one of the first studies I did at the NIH was to look at adult men who had early childhood onset of their symptoms and we found that that group of men had smaller than typical size of their Caudate Nucleus. The Caudate is a structure within the Basal Ganglia that's kind of a gatekeeper, decides what impulses should go forward and what shouldn't. And we know -

Natasha Mitchell: - and these are all structures in the brain?

Susan Swedo: Correct - in the brain. And we know that the chordate is involved in OCD. Those men had smaller structures and when we went back and looked at their history they had a very PANDAS-like picture, suggesting that maybe they had had the strep triggered onset but then ended up with some tissue damage leading to atrophy of their Caudate. In our kids who were acutely affected the children who were actively having symptoms in early childhood, we know that the caudate, the putamen and the globus pallidus - all of those are brain structures in the basal ganglia - are actually larger than expected, suggesting that the structures are inflamed.

Natasha Mitchell: So they're swollen?

Susan Swedo: Yes, they're swollen.

Natasha Mitchell: Let's just explain the mechanism that you're proposing here because it is fascinating. The suggestion is that it's not the Strep bacteria themselves that are causing the problem but the children's immune response to it?

Susan Swedo: Yes, so what we envision, based on modelling done for rheumatic fever, is that the children are susceptible on the basis of genetics and it's probably that their immune system is hyperactive.

Natasha Mitchell: So the antibodies that attack the strep are effectively attacking parts of the brain or some of the children's own brain cells in some way. They've been dubbed 'anti-brain antibodies' as a result. How do they get into the brain? because of course, we all know that there's a blood/brain barrier so somehow these antibodies that are meant to be jumping on the Strep are getting into the brain. Do we know how?

Susan Swedo: Right. Well there's two things - first of all we now have discovered that the blood/brain barrier really isn't so good a barrier. That things can cross it pretty easily, including antibodies. And the second thing is that the brain actually has the capacity to make antibodies and to have its own immune reaction. And that might explain why the strep throat, strep infection has gone from the body and yet the reaction continues in the brain.

Natasha Mitchell: Many people are a little sceptical of all this still aren't they?

Susan Swedo: Oh absolutely.

Natasha Mitchell: They're concerned that you're actually looking at a lot of these cases retrospectively, you're looking back at them and you're trying to find the cases.

Susan Swedo: Yes, and that's actually how we developed the criteria, it was completely done, based on the parental history and the child's history retrospectively determined. There are five criteria for the PANDAS sub group. But then we have actually gone forward and examined the next hundred children prospectively and determined which ones fit those criterion and which ones didn't. We've followed them over time and we now have over a decades worth of experience with the groups of kids, the PANDAS and the non PANDAS OCD.

The controversy continues and I'm not quite sure why, but in science any time you have a new finding, until it can be replicated by a number of different groups, people are appropriately sceptical.

Natasha Mitchell: What's the message for doctors and parents because you can understand parents of children will be asking: 'could this be my child?' And for doctors they'll be thinking, 'well, can I afford to be testing for strep in every case?'

Susan Swedo: So here's the good news. Doctors are already testing for strep to prevent rheumatic fever. We're not asking them to do anything that they wouldn't do medically otherwise. If a child has symptoms of fever with abdominal pain, sore throat, you're going to be checking a throat culture to see if they have strep and you'll treat it to prevent rheumatic fever. So everything is exactly the same there.

The only thing that gets a little bit different is, we would advise that if a child presents to a clinic with a very abrupt onset of obsessive compulsive symptoms or tics or certainly the triad of obsessive compulsive symptoms, tics and ADHD symptoms, that you might check a throat culture. And normally that wouldn't have been part of the workup for that child. You would have been thinking about - 'do I need to put into the psychiatric hospital or not?' If the child is positive and you treat that strep throat infection that's a minor investment to make for the potential of really being very helpful to them.

Natasha Mitchell: The issue does remain though there's still no definitive lab test.

Susan Swedo: That is correct, so it has to be based on history and you're exactly right, that we do not want parents sort of getting worried that their child has been exposed to a strep and so maybe they are going to get OCD down the line. And in fact one of my colleagues has accused us of creating 'streptococcal neurosis', a new fear of strep. We're not trying to do that at all, I think it's just good commonsense as paediatricians to be always vigilant against rheumatic fever and the PANDAS sub group is a relatively minor criterion within that.

Natasha Mitchell: Dr Susan Swedo from the National Institute of Mental Health in Bethesda, Maryland. And her colleagues have just published a study which suggests they've found the strep antibodies that might be responsible in both children with Sydenham's Chorea and this type of Obsessive Compulsive Disorder. They've also shown that these antibodies react with brain cells in a test tube to produce an enzyme that disrupts neuron activity - interesting.

Professor David Castle agrees it's plausible that a common bacterial infection could trigger powerful psychiatric symptoms like this.

David Castle: I think what's really important to stress though, that the vast majority of cases of Obsessive Compulsive Disorder are not consequent upon streptococcal infection or to antibodies as far as we're aware. Most cases we just don't understand where it comes from.

Natasha Mitchell: With this sort of sub-type of Obsessive Compulsive Disorder that might be caused or triggered by a strep infection, what do we need to know to be confident that that's happening?

David Castle: What we would really like to see is large robust numbers of cases described who undoubtedly have a temporal sequence of an infection and then the onset of this set of symptoms. My understanding of the literature is that there's a relatively small group of researchers in the States who have described the vast majority of cases.

Natasha Mitchell: And people are sceptical as a result - that, really, a lot of the work's coming out of one lab?

David Castle: One must always be circumspect about that and that's not to cause any aspersions upon the quality of the researchers who have described it, who are very high calibre and work in an extremely good centre. Unfortunately sometimes what occurs is, if you become very interested in something you look for it everywhere and maybe start attracting referrals of lots of people who have this particular problem, and then you think it's much more common than it really is.

Natasha Mitchell: Professor David Castle and I'm Natasha Mitchell, this is All in the Mind on ABC Radio National, airing internationally on Radio Australia and via podcast at abc.net.au/rn.

One in 100 young people, that's 40,000 children in Australia are estimated to live in the mental battle zone we know as Obsessive Compulsive Disorder.

Natasha Mitchell: And she was avoiding colours and avoiding certain roads?

Mother: Definitely, they would relate to something that she felt uncomfortable with at the time and so therefore if she felt uncomfortable with that situation, then you need to avoid being back where that situation was. The colour would have been used by somebody that had made her feel uncomfortable, so that colour then related back to that incident.

But she would never bring anybody home, so everything was very separate, and she couldn't ring people, she couldn't do any of those sorts of things, never let the school environment contaminate the home environment.

Natasha Mitchell: Did she find herself doing all these rituals at school as well?

Mother: No I think she worked very, very hard to keep that under wraps. She multi-tasked which made her very, very tired - that was another outcome.

Kathryn l'Anson: I know a young girl who would lie there for about 15 minutes before she could actually open her eyes and wanting to make sure she didn't have any bad thought in her mind when she opened her eyes. If she did have a bad thought then that would mean that she'd have a really bad day and that bad things could happen. So she'd struggle for ages to try and make sure she'd open her eyes when she had a good thought, and then actually getting out of bed, putting her feet on the floor, and that would go onto going down stairs and having breakfast, are all affected by wanting to do the right thing and do it perfectly and stop the bad thoughts from being there.

Natasha Mitchell: What sorts of bad thoughts?

Kathryn l'Anson: Things like contamination, worrying that the person might pick up some sort of virus or germ, that then they would spread to the family and cause family members or mum and dad to get sick.

Natasha Mitchell: So it's sort of catastrophic thinking?

Kathryn l'Anson: Very catastrophic.

Natasha Mitchell: We don't often hear about the cognitive aspects of this, that in fact many rituals can just be totally internal.

Kathryn l'Anson: Yes, and in fact they're the type of obsessive thoughts that people find incredibly difficult to talk about, because it's like thinking the most inappropriate thing at the most inappropriate time. Aggressive thoughts, violent thoughts, sometimes inappropriate sexual thoughts or blasphemous religious thoughts. The thing is that everybody has these types of thoughts, the difference is for most people, they would treat those thoughts a bit like junk mail and you can associate it with something like 'oh, I'm just having a bad day, I'm feeling grumpy or irritable'. Whereas someone who has a tendency to OCD tends to think 'what does that mean about me? I must be a really bad person, I must be an evil person to have a thought like that' and start to feel guilty and ashamed.

Natasha Mitchell: What sort of understanding, David Castle, do we have today of what's at the root of Obsessive Compulsive Disorder? Is it anxiety gone astray or is there perhaps a deeper interplay here with a certain neurobiology or a genetic predisposition?

David Castle: I think the causes exactly of OCD are not clearly understood. Sometimes it does run in families so identical twins would have a much higher likelihood of each getting one if one had it. And there's some good studies to show that. If you had no, or very little genetic vulnerability and you grew up in an environment where your mother was very obsessional about cleanliness you would be unlikely to get the disorder. If you were unfortunate enough to have a strong genetic vulnerability plus that environmental problem then it would boost your chance.

Natasha Mitchell: Is there a cognitive style that we've come to understand amongst people who are more prone to developing Obsessive Compulsive Disorder?

David Castle: The cognitive style of Obsessive Compulsive Disorder - classically we think about the sort of over-carefulness and people being very exact and precise about things and needing everything to be the same. In fact increasingly the literature shows that those sorts of personality traits aren't very strongly associated with Obsessive Compulsive Disorder, and it might be something rather different going on.

Natasha Mitchell: On to treatment for people with Obsessive Compulsive Disorder they're receiving a rather varied array of options, combining cognitive behavioural therapy, with anti-depressants and even with anti-psychotics, or different combinations of all three, none of which are a magic fix by any stretch. It's certainly confusing for patients and I'm wondering what sort of evidence-base do we have for the combinations being used?

David Castle: The gold standard sort of treatments are psychological treatments and certain types of anti-depressants which boost the amount of serotonin in the brain. And there's good evidence that certain types of psychological therapy are effective, one of those is called just behaviour therapy, which is looking at, essentially looking at the behaviours and the rituals and changing the pattern of behaviours. Some people add a cognitive element which is looking at the thinking as well. There are pharmacological treatments, also have a very good evidence base, the serotonin re-uptake inhibitors.

Natasha Mitchell: The SSRI's - the common anti-depressants that people are using today.

David Castle: The combination of the two I always think is the best way to go, because by using the psychological treatments the person learns a lot more about how to control their own symptoms.

Natasha Mitchell: But surely medication alone can't be effective for someone who has so many complicated ritualised thoughts and behaviours?

David Castle: Remarkably, some people I've seen respond remarkably well just to an SSRI, but it's not usual in my practice to just do that.

Natasha Mitchell: David Castle, Professor of Psychiatry at the University of Melbourne and St Vincent's Hospital.

The mother we heard from earlier didn't want to turn to medication for her daughter but found it very hard to find appropriate help. She stumbled across an excellent therapeutic initiative called Countdown, one of few like it in Australia. Still a pilot, it's run by the Anxiety Recovery Centre in Melbourne, focussed on early intervention using cognitive behavioural therapy and group sessions for 12 to 15 year olds - and sessions for their parents too, with follow up over a year. Director, Kathryn I'Anson.

Kathryn I'Anson: The focus of dealing with the symptoms is firstly, understanding how OCD works so in the sessions we'd spend the first few weeks actually helping the kids understand why they have these thoughts, why they are so stuck, and the next part would be choosing particular behaviours that they want to work on. Changing the rules - because there're so many rules involved in OCD behaviours.

Natasha Mitchell: You talk about devaluing the rituals but also allowing obsessions. What are you getting at there?

Kathryn l'Anson: The reason why other people's thoughts that are like obsessions don't stay stuck, people just ignore them and just allow them to be there. So allowing them to be there is just a change of response. You basically are trying to get the brain to remove the red flag off the thought. If we just allow it to be there, it's sort like allowing the brain to habituate to it.

Natasha Mitchell: It must have been quite something for your daughter to meet other young people her age, dealing with these same mental processes and turmoil that she was going through? But it must have been hard, it's a very secret world that these young people experience.

Mother: Yes very much so, it is. And it was hard but that's why I have such a great deal of admiration for my daughter. I think she is extremely brave in the way that she actually deals with it. And she was very willing to go, she needed that outlet. And I think for her to realise and to be with other children who have OCD she learnt about what OCD was in 'teenage speak' that was relevant and OK for her that didn't actually come from her parents. I cannot reiterate enough from our point of view the incredible support the team has been. It is so hard to find somewhere to go. I was just lucky.

Natasha Mitchell: Are some of the patterns still there for her?

Mother: Yes, they are, they come and they go, sometimes she's very, very good and at other times when there are stressors in her life she will do some of the patterning and that again is because the stress is very high.

Natasha Mitchell: And thanks to that mother and her daughter for agreeing to share their story on the program this week. A generous offering that they hope will help others. A reminder you'll find the downloadable audio of the show on our website, podcast it or save it onto your computer, head to abc.net.au/rn/allinthemind and they'll pop the link to the Countdown program there too, as well as a transcript you'll see later in the week. Emails for there as well.

Thanks today to John Jacobs for his reading of Morris's story, to producer Abbie Thomas and sound engineer Jen Parsonage, I'm Natasha Mitchell and next week the moral mind. Until then, take it easy.