Trigger warning: Mention of suici*e and e*ting disorders
Heart-breaking. This is the world which comes to mind when I think of the doctors who say they 'don't believe in PANDAS / PANS' despite the fact that these conditions have been studied at Harvard, Stanford and Yale university, and are treated at Stanford's immune behavioural health clinic.
I have yet to find many other conditions which so many people deem 'controversial', at the detriment of those who are afflicted. To push the notion that PANDAS / PANS isn't real is not only scientifically incorrect, but it discourages physicians from treating patients with the condition and prevents people from seeking a diagnosis. This means that people are left to suffer with this debilitating condition, left completely dysfunctional and in a waking nightmare, and sometimes left untreated until the point where they die from the complications of food restrictions or from suicide.
In this article I am going to discuss some of the main points I have heard regarding people's views towards PANDAS / PANS either not being a real condition or a distinct diagnostic entity, and sharing my views on these as a person with PANDAS.
“An infection may have triggered it, but now it can be managed and treated in the same way that Tourette’s and classic OCD are”
Unfortunately, people with PANDAS / PANS don't always respond to the management strategies used for people with Tourette's and Classic OCD. SSRI medication which is usually used for OCD may be more likely to cause side effects such as akathisia and agitation in those with PANDAS / PANS1, and some people do not see any beneficial effect from it and some people do not respond much to antipsychotics either which are often used for tics.
For those that do respond to the medications, they are often still left to struggle with symptoms such as personality changes, brain fog, decline in handwriting and maths ability, oppositional defiance, increase in urinary frequency, loss of coordination, dilated pupils, developmental regression, rigid thinking, sleep disturbances and more which the medications do not address, therefore people can still be left dysfunctional even with the use of psychiatric medications as they do not target the other symptoms which can also be disabling and distressing.
Cognitive Behavioural Therapy is usually used in the management of OCD, but for someone with PANDAS / PANS, the anxiety can be so intense as PP causes extreme OCD, so it could either be cruel to expose someone to their fears in this state or a person may not see much symptom improvement with the therapy as sometimes people do not see a beneficial effect from therapy unless the autoimmune component has been addressed first.
Some people use the analogy of a flood, the flood represents the OCD symptoms and CBT is the bucket, but if the leak which caused the flood (representing the underlying infection and autoimmunity) is not addressed then using the CBT / bucket to try and address this flood / OCD isn't going to get you very far. However, once the infection and inflammation is addressed (the leak is fixed) then the flood / OCD symptoms may dissipate naturally, and then CBT can be used to manage and reduce the residual symptoms.
Some people may also struggle to participate in therapy or use the coping skills taught as people may struggle to comprehend things, have brain fog, memory problems, disinhibition or behavioural regression or be in a near catatonic state. These things can all make it very difficult to use therapeutic techniques.
As well as these factors, therapy and medication are likely to work best when used in conjunction with antimicrobial and anti-inflammatory treatments, as when the infection is eliminated and the inflammation is reduced then things can improve dramatically. On their own, therapy and medication are unlikely to lead to the best outcome for an individual as they don't address the root or the fact that PANDAS / PANS are autoimmune conditions.
Therapy doesn't stop intrusive thoughts from popping up, it just helps people manage OCD symptoms, but some people with PANDAS / PANS have automatic intrusive thoughts and mental tics every few seconds that make it difficult to focus and cause distress, but if there is a way to give someone a life free from frequent intrusive thoughts and intense fears then that way needs to be considered. Nobody should have to go through their life suffering with the hell of PANDAS / PANS when something can be done.
It would be fantastic if therapy and psychiatric medication could reduce the symptoms of PANDAS / PANS without immunological interventions, as then people wouldn't have to travel abroad to try and access treatment, or spend thousands and thousands of pounds on IVIG, or have to search around tirelessly for a doctor who can offer something that will address the autoimmune component. It would be so much easier for us if the therapy and psychiatric medication could give us our quality of life back, but unfortunately it doesn't always work out like this.
"PANDAS / PANS is the same as Tourette's and classic OCD"
Although PANDAS / PANS can look very similar to Tourette syndrome and classic OCD, there are some differences.
1. The onset of Classic OCD is usually gradual, whereas PANDAS / PANS is often sudden and debilitating and comes with a variety of other symptoms and can have a correlation with an infection. The OCD in PANS / PANDAS may not respond to typical OCD treatments.
2. PANDAS / PANS can have symptoms that are not associated with Tourette's, such as dilated pupils, psychosis, personality changes, sudden oppositional defiance, loss of coordination, developmental regression, REM behaviour disorder, seizures, increase in urinary frequency etc.
3. Tics are just one of many symptoms of PANDAS / PANS, the reason it can look so similar to Tourette's at times is because the same part of the brain is involved, but it is important to see the difference as the treatments and management strategies are different.
4. People with PANS / PANDAS can abruptly develop new symptoms when they go into a flare, so someone who had tics, OCD and rage in a previous flare may be fine for a while but then suddenly develop psychosis, loss of coordination, severe sleep disturbances and mood swings.
5. People with PANDAS / PANS often see improvement with antimicrobial and immunological treatments, whereas people with TS and classic OCD are unlikely to see this.
6. People can go into a flare when they have an infection and have a complete mental status change and suddenly deteriorate in a variety of different areas as they develop an array of different neurological and psychiatric symptoms, this does not happen in Tourette syndrome.
PANDAS / PANS and Tourette's & OCD can look so similar as the same part of the brain is affected. The Basal Ganglia is said to be involved in the pathophysiology of both Tourette syndrome and Obsessive compulsive disorder, and this is the same part of the brain that is attacked by the immune system in PANDAS / PANS. It is said that around 70% of people with PANDAS / PANS develop tics (Murphy et al 2015, Swedo et al 2015) and just because someone has tics doesn't mean that they have Tourette's. The NHS website says that tics are a symptom of Huntington's Disease and Cerebral Palsy as well as Tourette's, so tics can occur in other conditions as well.2
There are also neuroinflammatory differences between those with PANDAS and those with Tourette Syndrome. An article published on Medscape in 2014 said that a study found that those with Tourette syndrome had neuroinflammatory changes in the bilateral caudate nuclei, but those with PANDAS had inflammation in both the bilateral caudate nuclei and the bilateral lentiform nuclei, demonstrating some differences.3 This article however does question whether Tourette Syndrome and PANDAS are part of the same condition and that is what I used to believe as I know that people with Tourette syndrome can experience neuroinflammation from the consumption of food allergens, but over time I have learnt more about the distinction between TS and PANDAS, and although there are some similarities there are also many differences as listed above, therefore I now see PANDAS as a distinct clinical entity.
"Most kids get strep, so of course a kid who was destined to develop tics and OCD would get it as well"
Whilst this is true, this is like saying that those with Sydenham's Chorea, which is another step induced autoimmune disorder that affects the Basal Ganglia, would have gotten it anyway.
For those with PANDAS, it is more of a direct correlation as to someone getting an infection and going into a symptom flare, this cannot be coincidental as it can happen over time triggering each different flare and people may have evidence of strep in their system that once eliminated, the neurological and psychiatric symptoms decrease.
"It's a coincidence that they got better with antibiotics, they were going to get better anyway"
So many people in the PANDAS / PANS community have found relief from antibiotics, this has happened too many times to be seen as a coincidence. As well as this, sometimes when the antibiotics are removed, symptoms can return for some people, showing that it was the antibiotic having the therapeutic effect, the same goes for anti-inflammatories.
As well as this, people in the PANDAS / PANS community often experience symptom improvement with IVIG (intravenous Immunoglobulin) which is said to 'reset the immune system'. This shows that when the immune component is addressed, people's symptoms can decrease.
"PANDAS isn't a recognized condition"
This is incorrect. PANDAS was discovered by Dr Suzan Swedo at the National Institute of Mental Health and PANDAS is in the International Classification of Diseases 10 under the code D89.89 and in the International Classification of Diseases 11 under the code 8E4A.0 .
"They are new conditions"
This is correct, PANDAS and PANS are relatively newly discovered diagnoses, PANDAS was discovered in 1998 and PANS was discovered even more recently due to parents saying that other agents were triggering their child's condition.
Just because a condition is 'new' doesn't mean that it doesn't exist or that it doesn't need treating, all conditions were newly discovered at some point. Although PANDAS wasn't discovered until 1998, a book from 1894 titled 'On chorea and choreiform affections' by Sir William Osler gives the following quotes:
'Disturbances in the moral sense characterised by strange perverseness, great irritability in temper’
‘Emotional outbreaks. A frequent complaint from the mother is that the character of her child is completely changed'
'Patients may do odd or meaningless acts'
'Disturbances in the faculty of memory and attention'
'Actual melancholia may occur'
'Their most striking characteristics, hallucinations, delusions and mania' 4…
All of these quotes sound very similar to PANDAS, and seeing how this book was about Chorea and choreiform conditions, which includes Sydenham's Chorea as mentioned above in this article, we could speculate that some of these patients described may have had PANDAS, it just wasn't discovered yet. This is from 1894...
How would you feel if you woke up one day, consumed by horrific intrusive thoughts, having vivid hallucinations, unable to coordinate yourself, feeling as if you are in a dream because your whole mind is hazy, having memory decline so extreme that you have absolutely no idea what you did a few seconds ago, experiencing painful, involuntary spasmodic movements and contortions and unable to do basic daily tasks? How would you feel?
The ethics of not diagnosing and treating PANDAS / PANS
PANDAS / PANS can look similar to all of the worst mental illnesses rolled into one condition. People with PANDAS / PANS can have severe OCD, depression, mood swings, mania, eating disorders and psychosis. This is a waking nightmare for those with the condition, but it doesn't have to be this way. With early treatment, years' worth or even a lifetime of suffering can be prevented, but without the appropriate treatment then people can go through life experiencing symptom flares, being tormented by horrific psychiatric symptoms and being disabled and unable to do daily tasks due to this condition. No one should ever be subjected to this hell, and if something can be done - which it can, then it needs to be done. It is not right to tell someone that they will have to live like this and find ways to cope when treating the condition could give someone their life back, people's lives shouldn't be thrown away due to ignorance.
Imagine a child crying to you, begging you to make it stop and saying that they want to die, now imagine how it would feel if they were denied access to the treatment which could take their pain away. This happens to people in the PANDAS / PANS community day in day out, this must change.
Now ask yourself, what harm can come from testing someone for strep early on whilst it is in the system so that someone can get a diagnosis? Not much harm could come from that, but what harm could come if someone is not tested until it is too late and the strep is out of the system therefore the accurate diagnosis isn't given? This could mean someone going undiagnosed and suffering for years without the correct treatment.
In medical practice, doctors have to do what is in the best interests of the patient, known as beneficence, and the best thing for someone with PANDAS / PANS would be to be able to access the appropriate treatment. Doctors also have to prevent harm, including harm arising from neglect… Could it be seen as neglect when someone with PANDAS / PANS isn't given the appropriate treatment, as set out by the treatment guidelines which recommends a 3 pronged approach which encompasses treatment to manage the psychiatric symptoms, antimicrobial treatment and immune modulating treatment? Without the treatment guidelines being followed, many people experience undue suffering which could be prevented.
People have the right to medical treatment, and it is vital that people receive the correct diagnosis, PANDAS / PANS is not a diagnosis people get if they can’t accept that themselves or their child has Tourette’s or OCD – People would have nothing to gain from this except from hefty medical bills, a life where they are chronically misunderstood and now having to spend life waiting to find a doctor who understands. PANDAS / PANS is real and those dealing with the condition deserve better. It can sometimes take people years to get the correct diagnosis and PANDAS / PANS is more underdiagnosed than over diagnosed by far due to the misunderstandings around these conditions, but with awareness people won’t have to live a life of undue suffering which could be prevented and not knowing what is going on with them.
It is understandable that people would question the existence of PANDAS / PANS if they are not aware of the struggles people with PP go through, as it does look very similar to Tourette's and OCD if a person is not aware of the distinctions, but hopefully the points in this article can give some areas of consideration and can clear up some confusion.
References:
1. Anon, (2014). SSRI | PPN. [online] Available at: https://www.pandasppn.org/ssris/.
2. nhs.uk. (2017). Tics. [online] Available at: https://www.nhs.uk/conditions/tics/.
3. Medscape. (n.d.). Brain Imaging Differences in Tourette and PANDAS. [online] Available at: https://www.medscape.com/viewarticle/826614.
4. Osler (W) WO. (1894) On chorea and choreiform affections. London: H.K Lewis.
PP = PANDAS / PANS abbreviation