SUPPORT, INFORMATION & AWARENESS ON TIC CONDITIONS, OCD, PANDAS / PANS AND RELATED CONDITIONS
PANDAS / PANS
PANDAS stands for Paediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections. PANS stands for Paediatric Acute Onset Neuropsychiatric Syndrome. PANS and PANDAS are neuroimmune disorders. The immune system attacks part of the brain called the Basal Ganglia that is responsible for behaviours, movements, cognition and emotional regulation. When this part of the brain is attacked it becomes inflamed, leading to the onset of complex neurological and psychiatric symptoms. PANS / PANDAS is said to have a relapsing-remitting course, meaning that people have symptom flares when exposed to a trigger such as getting an infection and symptoms may come on very suddenly after not having major symptoms for some time, in each flare, people may develop new symptoms that they didn't display in a previous flare. For example, someone who had OCD, tics, rages and sensory issues in a previous flare may develop anorexia, depression, psychosis and loss of coordination in another flare. PANDAS is a diagnosis published in the ICD-11 and is recognised by the World health organisation, it is under the code 8E4A.0 . PANDAS is also in the ICD-10 under the code D89.89.
The diagnostic criteria for PANDAS is as follows:
1) Significant OCD symptoms and / or motor / vocal tics
2) Sudden onset of symptoms or a relapsing-remitting course of symptoms.
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3) Onset before puberty (although there have been cases where the onset has been reported to occur after puberty)
4) Association with another neurological symptom
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5) Association with a streptococcal infection.
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The diagnostic guidelines for PANS include:
1) The individual has OCD and / or food restriction
2) The individual had a severe and acute onset with at least 2 out of the 7 associated concurrent symptoms which include...
- Anxiety (including separation anxiety, school avoidance, social anxiety, panic attacks, newly developed phobias, excessive worrying etc)
- Emotional lability (extreme mood swings and pseudobulbar affect) or Irritability, aggression and severely oppositional behaviours which can include serious rages.
- Behavioural / developmental regression (eg, using baby talk, liking things that younger kids would usually like, acting younger than the chronological age, losing the ability to do things)
- Deterioration in school performance (especially related to maths, handwriting, executive dysfunction, memory issues, ADHD like symptoms, brain fog and creative decline)
- Sensory and motor changes (such as tics, sensory processing issues, hallucinations, loss of coordination, loss of sensation etc.)
- Somatic signs (such as sleep disturbances, dilated pupils, joint pain, enuresis and increase in urinary frequency)
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Symptoms cannot be better explained by another condition such as Tourette Syndrome, classic OCD, Sydenham's chorea, other forms of autoimmune encephalitis, early onset psychosis etc.
PANDAS is triggered by group A streptococcal infections. Some people get a throat swab to check but this may miss out on strep in other places such as impetigo, perianal strep, penile strep, intranasal strep and even strep in the gut. Some people get their ASO titre checked, or get the Anti-DNase B blood test, the latter can usually detect strep in the system for longer.
PANS can be triggered by other infectious agents such as mycoplasma pneumoniae, Lyme disease, influenza and more. Anything that triggers an immune response has the potential to trigger symptoms. Other factors can play a role such as mould exposure, metabolic disturbances and psychosocial stress as an infectious trigger doesn't always have to be present as PANS is a clinical diagnosis but it helps treatment if one is identified. The trigger for the initial onset is not always the same as the trigger for subsequent symptom flares, as people can have a multitude of different triggers.
The main things to look out for are severe OCD, tics or a new onset eating disorder that wasn't like that before. PANDAS / PANS can be debilitating to both the individual and the family. The family is often shocked at such a change. Early intervention is vital so that people can get the treatment they need in order to knock out the infection, reduce inflammation, support the immune system and manage neurological and psychiatric symptoms that arise. However many doctors misunderstand PANS and PANDAS, meaning that many people are misdiagnosed with conditions such as Tourette Syndrome, classic OCD, Autism, ADHD, Bipolar disorder, Anorexia, Anxiety, SPD (sensory processing disorder) , ODD (oppositional defiance disorder) or schizophrenia. This is harmful as people aren't given the treatment they need to effectively reduce symptoms and have a better quality of life.
PANDAS / PANS is said to be defined by its sudden onset, however for some people, they may have a more gradual build up or may have micro-flares but then one day it explodes and many PANDAS / PANS associated symptoms arise.
The National Institute of Mental Health lifted the age restriction for PANS, as people can develop it in adulthood, and children with untreated PANS / PANDAS can have symptoms that persist into adulthood, and if someone is exposed to a trigger in adulthood they may have a flare.
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In each flare people may experience an exacerbation of symptoms. The future flares may be worse than the flare before and could be a longer duration unless treated as soon as possible, but thankfully there are ways to manage it if you know about the condition. This is why awareness is vital, so that people can receive the correct diagnosis, effective treatment and support.
Symptoms :
Eating Disorders: The food restriction can be linked to Avoidant Restrictive Food Intake Disorder or Anorexia that comes on almost overnight, some people may be afraid of eating due to OCD worries, some people may have sensory issues that prevent them eating certain things and some people may fear choking, fear getting ill from what they have eaten or fear that the food in contaminated. Some people may obsess over certain ingredients or worry about weight. 2
Anxiety: Separation anxiety (struggle to sleep in a room on their own, fear of being away from caregivers, perceived as ‘clingy’), generalised anxiety and excessive worry, intense fear for seemingly no reason, new development of random fears and phobias - can be a fear of buttons, old things, forks, hair bands etc, panic attacks and fight or flight mode, being hypervigilant, school refusal due to extreme anxiety.
Emotional Lability & Depression: People may have episodes of uncontrollable crying or laughter in inappropriate situations or not in proportion to the trigger (pseudobulbar affect) people may have mood swings that cycle frequently, and at times may appear ‘manic’ and have intense euphoria, people who were once optimistic and positive may become severely depressed overnight and be burdened with intense shame, excessive guilt, lose motivation to do the things they love, not see the point in doing things, begin to hate themselves and other symptoms of depression, this can be accompanied by suicidal ideation very suddenly.
Aggression, Irritability, Oppositional Behaviour: The sweetest, kindest individual may develop oppositional defiance, personality changes and ‘antagonising behaviours’ very suddenly. They may refuse to do simple things such as taking care of themselves or fulfilling their responsibilities, they may appear stubborn and refuse to do things, they may name call and say horrible things, they may become irritated at the slightest little thing and families say that they are ‘walking on eggshells’, people may have severe rage attacks where they hit, kick, scream, shout and swear and throw and break things, these can put immense strain on the entire family and in one of these rages an individual loses control of their rational thinking and actions and can feel furious for no reason or due to a slight trigger, people may have to be restrained. It is vital to note that although this looks behavioural and although many people are accused of doing it deliberately or being ‘badly behaved’, this is not what it is. People do not want to act this way and sometimes these rage attacks can be described as ‘seizure like’ as people can sometimes feel them building up. The insults and name calling can be due to the personality changes, and people may also struggle with emotional regulation because they are so anxious, irritated, scared or consumed by intrusive thoughts and they are in fight or flight mode so may ‘act out’ without being able to regulate their emotions or control their reactions. Discipline or behavioural charts do not reduce the rage attacks or meltdowns, as they are the result of the basal ganglia being attacked by the immune system, leading to a loss of control of behaviour, emotion and thought.
Behavioural/Developmental Regression: Loss of abilities, stuttering, word mix ups, some people go nonverbal, some people are clingy and do not display age appropriate behaviours, some people may begin to drool, some people may have interests typical for those younger than them, loss of emotional regulation.
Deterioration of learning abilities: ADHD symptoms that can be extreme, include inability to stay still, needing stimulation to function, executive functioning issues, disorganisation, excessive daydreaming, making mistakes etc - some people also have intense restlessness, brain fog where it feels like you are in a hazy state and cannot recall things and feel as if you ‘aren't really there’ and may be trapped in your mind and unable to do things such as even write a sentence, rigid thinking where it is difficult to comprehend anything - can take things literally and appear ‘stubborn’ due to black and white thinking, decline in handwriting, work presentation and maths ability, loss of creativity, memory decline, incoherent stream of thoughts, cognitive decline.
Sensory & Motor Abnormalities: Motor and Vocal tics which can look identical to Tourette’s (around 70% of people with PANS / PANDAS develop tics) 3, Phantom and sensory tics, Loss of fine and gross motor coordination ( some people may struggle to do up buttons, tie shoelaces or write, and some people have gross motor coordination issues so severe that they cannot feed themselves properly or hold a fork, they may struggle to move voluntarily unless they place all of their focus on that part of the body and can only physically move one part of their body at a time, people may struggle to touch their nose and their limbs may feel incredibly heavy, loss of balance, loss of sensation where some parts of the body may go numb or tingly, and sometimes a person’s entire body can feel numb and they may not feel things touching their skin, some people may have bizarre sensations or tactile hallucinations. Since the basal ganglia is linked to our ability to swallow, some people may lose this ability, sometimes only temporarily. Sensory processing issues are common including sensitivity to touch, sound , light ,textures, taste, smell etc, people may have visual processing issues where they may read something and struggle to comprehend it or things might look different as people can have slight visual distortions, some people may have under sensitive proprioception meaning that they struggle to feel where their body is in terms of space and may be unable to stop moving around and may be uncomfortable or seem agitated due to this, some people may have self -stimulatory behaviours to cope with the sensory issues. Some people have difficulty walking, especially in the mornings. Some people have visual and auditory hallucinations.
Somatic Signs: sleep disturbances such as insomnia (difficulty falling or staying asleep - can be debilitating) , REM behaviour disorder (people may act out their dreams), night terrors and nightmares, delayed sleep phase disorder (where people’s body clock is changed) , hearing thoughts in sleep, enuresis where an individual may suffer from bedwetting, daytime wetting, or urinating in strange places, many people have an increase in urinary frequency - not related to OCD, where they need the bathroom constantly and go many, many times because they do genuinely need it and it can feel very urgent.
Other Symptoms: Other symptoms can include catatonia - Some people become catatonic and unresponsive to their surroundings and be in a stupor and other people may have to wash, bathe and dress them. Some people may experience fatigue and lack of cognitive and mental stamina, some people may have severe brain fog and may be in a trance like state where they are unaware of what is going on around them. Many people have dilated pupils or may seem zoned out, some people experience pain, joints may ache due to the inflammation, some people may become dissociated and some people have seizures. Some people also have the loss of ability to swallow.
Management for PANDAS/PANS:
Antibiotics: Antibiotics can eradicate the triggering infection, such as a group A streptococcal infection in PANDAS. Some people can see symptom improvement quickly, within a few hours or days of taking them, but for some people, improvement is seen after a few weeks. Some people see a dramatic reduction in the neurological and psychiatric symptoms whilst on antibiotics.
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Some people are kept on long term antibiotics if necessary to prevent an infection which could exacerbate symptoms or trigger a symptom flare, and some people are prescribed antibiotics when having dentistry work done to prevent a symptom exacerbation.
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Anti-inflammatories: Non-steroidal anti-inflammatory medications such as Ibuprofen can decrease symptoms for some people when they are experiencing a symptom flare. It's also said that for some people, the anti-inflammatories may shorten a flare for some people. Some people may find natural anti-inflammatory methods helpful as well.
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Plasmapheresis: Plasmapheresis is where an individuals blood is removed from the body through a intravenous catheter. The blood is then processed by a machine which separates the plasma from the other parts of the blood. The plasma is then replaced with albumin, and then put back into the persons body through another IV catheter. Multiple procedures often need to be done due to the amount of blood that needs to be processed. Plasmapheresis is said to decrease the antibodies circulating in the blood, therefore reducing the symptoms as the immune system is not attacking the brain with such intensity.
IVIG: IVIG stands for Intravenous Immunoglobulin and is where people get an infusion of antibodies pooled together from many donors. IVIG is said to 'reset' the immune system, and is used in a host of inflammatory diseases.
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IVIG is said to be used in severe cases of the condition. IVIG is not currently available on the NHS in the UK for PANDAS / PANS, but people in countries such as America use it with success.
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In the USA, IVIG is not always covered by insurance and can be highly expensive, but many people say it is worth it.
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Diet: Some people with PANDAS / PANS have food sensitivities that trigger neuroinflammation. Food sensitivities are different from food allergies as sensitivities involve Immunoglobulin G, IgM and IgA, whereas allergies only involve IgE antibodies. For this reason, food sensitivities may not be detected by traditional allergy testing so more specialist test would be needed that detect the correct antibodies. Common food sensitivities that trigger neurological symptoms include dairy, gluten, food dyes, citrus fruits, sweeteners, corn, nightshade vegetables, salicylates, MSG, sugar, cocoa and more. Everyone has different food sensitivities, and different foods can trigger different symptoms. It is important to be mindful of what an individual is consuming outside of the house as the tiniest bit of a trigger food can trigger severe symptoms. Some people may need a specific diet such as a low-histamine diet or a diet where inflammatory foods such as sugar and gluten are removed, or an anti-inflammatory diet.
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