The reality of PANDAS / PANS / BGE

You wake up one day, bombarded by horrifying thoughts which you can’t control. You have no idea what is going on and everything seems hazy. You cannot focus on ‘simple’ things and your ability to think clearly has vanished. You can no longer control your movements or vocalisations and become pained by the involuntary muscle clenching and spasmodic movements. Hours of your day are consumed by laborious rituals which you cannot stop, you have no free time and no room for fun.

Daily tasks become a huge chore, with all of your effort and energy spent just trying to get through the day. Your eyes are glazed and your pupils are enlarged, your handwriting has become illegible and you cannot complete work which you once breezed through. You explode into violent episodes of unbridled fury, where you lose control of your rational thinking and actions and lash out at those you love the most.

The doctors say you are badly behaved or that you need to learn to stop these things, but you can’t. You aren’t doing this on purpose and every time someone hints that this is all behavioural, a wave of despair washes over you as you know that you do not want to be doing these things, you cannot control it.

This is how someone with PANDAS / PANS may feel.

What is PANDAS / PANS?

It is the affliction which can cause a 4 year old girl to beg her mother to make the torment stop, the condition which would make this child do anything to be free from this nightmare.

It is the condition which can make a previously bright and carefree teenager live in terror and be plagued with anxiety and intrusive thoughts. It is what causes them to now be unable to keep up with their peers academically.

It’s the condition which can make a young boy act extremely out of character - becoming aggressive and violent at the flick of a switch, the condition which leaves him twisting, turning, yelping, yelling and barking uncontrollably.

It's the brain inflammation that leaves someone crying and screaming in a corner for hours.

It’s the condition which can change someone overnight and leave them as a shell of who they once were. It’s something which can leave someone stuck in psychosis and unable to dress themselves, brush their teeth or wash their own hair.

It’s a condition which can make a teenager suddenly unable to wear socks, for if they do they will scream from discomfort and it is the condition which can make them petrified of absolutely everything.

The simplest way to describe PANDAS / PANS, is that it is a waking nightmare. In a clinical sense, PANDAS is a condition in which the immune system has the incorrect response to a strep infection, and instead of just attacking the bacteria, the immune system goes on to attack part of the brain called the Basal Ganglia. PANS is a condition that shares the same sort of symptoms as PANDAS, but can be triggered by other infectious agents such as viruses, bacterial and fungal infections, along with other triggers such as stress and metabolic problems.

The psychiatric symptoms that someone with PANDAS / PANS may exhibit include severe Obsessive Compulsive Disorder, Separation Anxiety, Anorexia, Depression, ARFID, Psychosis and more. As well as psychiatric symptoms, many people have neurological symptoms. Motor and vocal tics, sleep disturbances, dilated pupils, changes in coordination, brain fog, memory decline, maths problems, changes in sensation, sensory processing issues, rage attacks, personality changes, seizures, hyperactivity, choreiform movements, wetting and urinating more than usual, oppositional defiance and other issues can all be symptoms that people with PANDAS / PANS experience. Everyone presents differently and can have a different mix of symptoms, only 3 are needed to meet the PANS diagnostic criteria. Symptoms can change over time, they can morph and new symptoms can develop in each flare.

It’s a condition which medical professionals are increasingly becoming aware of, but it can be difficult to get diagnosed. Some people wait years for the correct diagnosis, and sadly some never even get formally diagnosed. It is a condition in which some people seem to misunderstand or not believe is a real entity, but the science shows otherwise. PANDAS & PANS have been researched by Stanford, Harvard and Yale University and are very real indeed. It is vital that people with PANDAS / PANS get the correct treatment which targets the underlying trigger such as an infection, treatment that reduces inflammation and treatment which supports the immune system, along with treatment to manage specific symptoms. Some people with PANDAS / PANS do not always respond to medications that are traditionally used to treat psychiatric symptoms, and some people may be too debilitated by the condition to see much benefit from psychological therapies. PANDAS is an autoimmune condition and must be treated as such.

Although most people with OCD, eating disorders and tic disorders such as Tourette’s do not have PANDAS / PANS, I believe it should always be considered whenever someone develops these symptoms suddenly or when the symptoms are particularly severe or resistant to typical management strategies. PANDAS / PANS should also be considered when people present with atypical symptoms that do not fully fit into the criteria for another condition such as Autism or Tourette Syndrome. Identifying those with PANDAS/ PANS and treating the condition effectively can give someone their quality of life back, this is the care that people deserve. At times, PANDAS may be difficult to diagnose as people may not find out about the condition until the strep infection is out of the system - the symptoms can sometimes still persist when the infection is not present, causing post-infectious neuroinflammation.

I wish for a world in which every psychologist, psychiatrist and neurologist is educated on PANDAS / PANS and equipped to diagnose / recognise it and refer people to the appropriate services for effective treatment and support. No longer will PANDAS / PANS be deemed ‘controversial’, we have moved on from that. PANDAS is a recognised diagnosis in both the International classification of Diseases 10 and 11. With increasing awareness and education, those of us with PANDAS / PANS can receive the help and support which we so desperately need, and can be saved from a lifetime of suffering.

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