Seeing your child change so suddenly can be terrifying. They may have gone to bed one evening happy and healthy, and the next day they may wake up tormented by unwanted thoughts which hijack their consciousness. They may be a shell of who they once were due to hours worth of laborious OCD rituals which prevent them from doing anything which previously brought them joy. I am not a parent, but I am a young person who endured this myself as a child, so I would like to share what I feel parents need to know if their child is going through something similar.
PANS. This is a small acronym which has the power to change someone’s life beyond measure, if they are diagnosed with it and receive the appropriate care. PANS and PANDAS are conditions which often trigger a sudden onset of severe Obsessive Compulsive Disorder. PANDAS is where a Streptococcal infection (which may have gone undetected without the typical symptoms) triggers an autoimmune attack on part of the brain called the Basal Ganglia, leading to OCD or / and tics. PANS is similar, but can be triggered by infections other than Strep, such as Influenza, Lyme Disease and Co-infections, Chickenpox, Mycoplasma Pneumoniae, and much more. In some cases it is also possible for PANS to have other triggers such as mold toxicity, stress, and metabolic issues.
PANS and PANDAS require unique intervention, the typical management strategies for OCD are unlikely to be enough to quell the inflammation in the brain and halt the autoimmune attack. Sadly, PANS and PANDAS are often misdiagnosed, as a lot of OCD specialists and Tic Condition specialists do not have adequate knowledge on the conditions which means that many people are left to endure years worth of preventable suffering.
OCD and tics are just the tip of the iceberg for people with PANS and PANDAS, many people experience more complex psychiatric and neurological symptoms which can impact them greatly. Other symptoms may include:
Urinary Incontinence / Enuresis
Loss of coordination
Sensory sensitivities and other sensory processing issues
Behavioral and developmental regression (people may unintentionally act a lot younger than their age.)
A decline in math ability
A deterioration in ones handwriting
Oppositional defiance traits
Rage attacks and aggression
Psychosis and hallucinations
Depression and low mood
Generalized anxiety and panic attacks
Reduced muscle tone
PANS/PANDAS affects everyone differently, some people only ever have a few symptoms, whilst other people have a whole list of different symptoms. To be diagnosed with PANS, only 3 symptoms are needed, and to be diagnosed with PANDAS, either sudden OCD or tics plus one neurological difference is required.
The symptoms of PANS and PANDAS can change over time. Some people with PANS/PANDAS may have a relapsing-remitting course of symptoms, so a person may have months of debilitating symptoms, then a month without them, then get an infection and be disabled by the severe symptoms again. It is possible that someone may have a flare when they are a young child where they may have severe separation anxiety, sensory issues, meltdowns, tics, a restricted intake of food, and communication difficulties, but then when they are a teenager or young adult they may have another flare which consists of OCD, psychosis, seizures, loss of coordination, and depression, for example. This is how much the symptoms can change in each flare.
It is possible that your child's severe OCD may be linked to PANS/PANDAS. To see whether this is a possibility for your child, you could:
Seek the help of a PANS/PANDAS specialist. Your local doctor or OCD specialist may not know enough about PANS/PANDAS. PANS/PANDAS specialists are the doctors who have dedicated their lives to helping people with the conditions.
See if you can get the Cunningham panel of tests. This is a blood test which can help detect whether your child has the antibodies present which could indicate an autoimmune attack on the brain associated with PANS/PANDAS.
Do not listen to a doctor if they dismiss the possibility of your child having PANS/PANDAS. PANDAS is in the International Classification of Diseases 10 and 11 and the Stanford and Harvard medical teams raise awareness of PANS/PANDAS.
Get into contact with PANS/PANDAS organizations if you need support. The organization's websites may have lists of specialists.
Join PANS/PANDAS Facebook groups to get support from others in the community and get recommendations on good doctors.
The correct diagnosis of PANS/PANDAS if it is present is absolutely vital, as it may allow someone to access the appropriate care.
Here are some facts:
PANDAS is a form of Basal Ganglia Encephalitis
Although the ‘P’ in PANS stands for ‘Paediatric’, it is possible to develop PANS in adulthood, this is why some people just call it ‘BGE’, for Basal Ganglia Encephalitis.
The tics in PANDAS and PANS can take many forms, and may be identical to Tourette Syndrome.
Being the parent of a child with severe OCD can be incredibly stressful, so try as best you can to find others who understand and who you could talk to. This could be other parents you meet in support groups or an understanding friend.
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.