Trigger Warning: Mention of Ea*ing Disorders,
PANDAS and PANS are conditions that can cause tics and/or OCD, along with other neurological and psychiatric symptoms. The onset is often sudden, and the conditions are often triggered by infections.
PANDAS stands for Paediatric Autoimmune Neuropsychiatric Disorder Associated With Streptococcal infections, and PANS is an acronym for Paediatric Acute Onset Neuropsychiatric Syndrome.
As you may be able to tell by the name, PANDAS is triggered by Streptococcal infections. When someone has PANDAS, their immune system has an unhelpful reaction to a streptococcal infection, and instead of just attacking the infection, the immune system goes on to attack part of the brain called the Basal Ganglia. This is the part of the brain which is often thought to play a role in conditions such as Obsessive Compulsive Disorder and tic conditions such as Tourette Syndrome. When it is attacked by the immune system, it becomes inflamed, and when it is inflamed, symptoms associated with Basal Ganglia disruption may be experienced. This includes tics and/or OCD, and sometimes eating restrictions along with other symptoms.
PANS can be triggered by other infections such as influenza (the flu), Lyme Disease and related infections, Mycoplasma Pneumoniae, and more. Some people with PANS have triggers which are unrelated to infections or which may be less well known. These triggers may include trauma, mould, pollen and allergens, metabolic issues, and other factors.
For a diagnosis of PANDAS, only sudden onset OCD or tics need to be present, along with one other neurological symptom, however people may have other symptoms as well. A Streptococcal infection needs to be identified to confirm the diagnosis of PANDAS.
People with PANS need at least 3 symptoms for a diagnosis, and one of those symptoms must be either OCD or eating restrictions.
Other symptoms that people with PANDAS / PANS may experience include:
● Personality changes
● Dilated / large pupils
● Psychosis / hallucinations
● Separation anxiety
● Rage attacks
● Loss of coordination
● Loss of sensation
● Sensory sensitivities and sensory processing issues
● Mood swings
● Random outbursts of crying and / or laughing
● Brain fog
● Oppositional defiance
● Issues with concentration, attention regulation, and executive functioning.
● Communication issues such as going non-verbal, stuttering, or experiencing selective mutism.
● Panic attacks and generalized anxiety
● Memory problems
● Developmental regression and acting younger than one's chronological age.
● Phobias that have appeared to come out of nowhere
● A deterioration in one's handwriting ability and maths ability.
● Incontinence and urinating more than usual
● Sleep disturbances such as struggling to fall asleep, waking up after just a few hours, a reversed sleep cycle, nightmares and night terrors, and bizarre experiences during sleep.
● Low muscle tone and choreiform movements
Everyone will have a slightly different mix of symptoms, some people may have a few whilst others may have a long list of symptoms, and the symptoms can change over time.
The onset of PANDAS / PANS is often very sudden, although there are cases where people may experience a more gradual onset of symptoms which eventually leads to a huge explosion of symptoms related to PANDAS / PANS. It is often said that a person can be healthy and happy one day, and then wake up the next day tormented by OCD, severe depression and tics for example, and be unable to do daily tasks.
You can have PANDAS / PANS without tics, and you can have it without OCD, but for PANDAS, at least one of these must be present.
PANDAS and PANS are unfortunately quite misunderstood conditions, especially in the UK, so some people go undiagnosed / misdiagnosed. Common misdiagnoses that people with PANDAS / PANS may receive include Tourette Syndrome, Autism, Classic OCD, Bipolar Disorder, 'behavioral problems', Attention Deficit Hyperactivity Disorder, Oppositional Defiant Disorder, Functional Neurological Disorder, Depression, Anxiety, Anorexia, Avoidant Restrictive Food Intake Disorder or Schizophrenia.
The intervention required for PANDAS / PANS is a bit different from the intervention needed for the conditions listed above, this is why it is so important that a person gets the correct diagnosis. It is often required that a person sees a specialist if they suspect that themselves or a loved one has PANDAS or PANS, as the average doctor may not know much about the conditions. I wish for the future generations to live in a world where every psychiatrist, neurologist, psychologist and paediatrician knows about PANDAS / PANS, as the correct diagnosis and care can change someone's life beyond measure and prevent them from living a lifetime of horrendous neuropsychiatric torture.
In my own experience, I was originally diagnosed with severe OCD at the age of 9, and severe Tourette Syndrome at the age of 15. However, when I was 17 years old, something very unexpected occurred. At the same time as having a throat infection, I had a return of my tics after hardly ticcing for around a year (my previous tic reduction was due to dietary intervention - the elimination of food sensitivities) and I developed OCD again after having no OCD symptoms for years. I also had other symptoms develop such as a loss of gross motor coordination, memory decline, hyperactivity, depressive symptoms, a loss of sensation throughout my body, sensory processing issues, brain fog, a constant stream of thoughts, dissociation, zoning in and out of awareness of what was going on around me, hearing my thoughts in my sleep, awakening after just 3 hours of sleep and being unable to fall asleep until the early hours of the morning, and more. It was absolutely terrifying. Because of the onset of various symptoms that could not be attributed to the original diagnoses given, and the correlation with a throat infection, it became clear to me and my family members that I have PANDAS / PANS.
It breaks my heart to think of all of the people who have PANDAS / PANS but have not been correctly diagnosed. This is because people are unlikely to get the right care without the correct diagnosis, and people may be shocked if their symptoms change. Symptoms of PANDAS / PANS can change over time and the conditions can have a relapsing and remitting course. This means that a person may have had OCD, tics, sensory processing issues and depression in their first flare, for example, but may get a little bit better after some time. A person may then develop an infection a few years later that triggers another flare, and in that flare people may have different symptoms such as anorexia, brain fog, loss of coordination, and psychosis. If someone doesn't know that they have PANDAS / PANS, they are likely to be extremely shocked and scared if they suddenly develop symptoms and wonder why, as they do not link to the original diagnosis given, if someone was not diagnosed with PANDAS / PANS in the first place.
PANDAS and infection-induced PANS are sometimes referred to as Post-infectious Basal Ganglia Encephalitis by those in the community and by specialists. This is because Post-infectious Basal Ganglia Encephalitis is a more accurate name for the conditions as it explains that it is triggered by an infection and is associated with Basal Ganglia inflammation (Encephalitis is inflammation of the brain). As well as this, the term Basal Ganglia Encephalitis does not leave adults out of the equation. The P in PANDAS and PANS stands for Paediatric, meaning children's, but children with PANDAS / PANS can grow into adults with PANDAS / PANS, and people can experience their initial onset of PANS in adulthood as there is no age restriction for a PANS diagnosis.
The thing is that in some cases, PANDAS and PANS can look virtually identical to Tourette Syndrome, as some people may not have symptoms such as psychosis, a loss of coordination and developmental regression, which are not part of TS and may distinguish the conditions. In these cases where PANDAS / PANS is suspected but resembles TS, it is vital that a person is examined by a physician who is aware of PANDAS / PANS and is able to take a detailed history and perform any appropriate tests to come to the correct diagnosis.
People with PANDAS / PANS can experience both motor and vocal tics, and can also experience coprophenomena, echophenomena and paliphenomena.
It is possible to have both Tourette Syndrome and PANDAS / PANS. In these cases, a person may have a sudden and severe exacerbation of tics and or OCD / ADHD symptoms, and may develop some other symptoms associated with PANDAS / PANS. When this happens, it is vital that the PANDAS / PANS is addressed if that is the cause of the exacerbation.
Here in the United Kingdom where I am from, there's only a handful of doctors who have knowledge on and awareness of PANDAS / PANS, and most of these doctors are in the private sector meaning that people may have to pay a lot of money to get the care that they need. As well as this, some of the treatments which have been recommended by international specialists to treat PANDAS and PANS, are not available in the UK for people with the conditions, meaning that people may be left to suffer. This is unacceptable. PANDAS and PANS are not rare conditions, they are estimated to affect 1 in 200 people.
A lot of people with PANDAS / PANS find that they do not respond to the typical interventions which are commonly used for tics and OCD, although some people may do. However, even for those who do respond, the interventions for tics and OCD are unlikely to reduce some of the other symptoms such as brain fog, a loss of sensation, urinary problems, regression etc, so if PANDAS / PANS is the case then it must be managed appropriately.
If you believe that yourself or a loved one may have PANDAS / PANS, then I will leave you with this message. It helps to trust yourself and find a doctor who will listen, no matter how hard that may be. If you are a parent then please know that the hard work that you put in to help your child pays off and one day your child will likely be very grateful. If you are a person with PANDAS / PANS or who suspects they may have the conditions, please know that there is hope for things to get better. There are many success stories of people going into remission. There is more awareness being raised by the day as the PANDAS / PANS community is working hard in this area, and within the next few years we will hopefully have more support services available for those with PANDAS / PANS. If you feel like PANDAS / PANS may be what yourself or a family member has, it can be life-changing to get in touch with a PANDAS / PANS charity / organization, as that is a good way to access peer support and get redirected to appropriate services.
Disclaimer: I am NOT a medical professional, this is NOT to be used as a substitute for diagnosis or treatment from a qualified physician, this is to be used for educational purposes ONLY. For medical advice, please see a medical practitioner. I do NOT claim to treat, cure or mitigate any condition.