What would you do if your usually happy and calm child suddenly woke up one day and was unrecognisable?
What if they started:
- Getting into trouble at school?
- Developing unusual tics?
- Experiencing out-of-character fussy or restrictive eating?
Unfortunately this is the reality for an estimated 1 in every 200 parents whose child experiences the acute onset of PANS or PANDAS.
So what exactly is it?
Understanding PANS & PANDAS
PANS stands for paediatric acute-onset neuropsychiatric syndrome. It is an autoimmune condition, affecting children aged between 3 to 12 years of age.
Triggered by an infection, virus or inflammatory reaction, some causes include lyme disease, influenza and herpes simplex virus. PANDAS is a subset of PANS and is caused by a Streptococcus infection, commonly referred to as ‘strep throat’.
PANS is a fairly recent medical phenomenon, first identified by a doctor in the 1990s.
While research is still developing in this area, PANS/PANDAS is caused by an autoimmune response called “molecular mimicry”. This is especially the case in PANDAS due to structural similarities between the Streptococcus bacteria allowing it to mimic our own body tissue.
As a result, the immune system starts attacking a region of the brain called the basal ganglia, which is responsible for behaviour and movement.
How does a child with PANS/PANDAS act?
PANS/PANDAS causes a sudden and severe onset of symptoms, usually occurring within 2-3 days of initial infection.
Due to a lack of knowledge in the area, it is often overlooked or misdiagnosed in general practice. Affected children are usually referred on for psychiatric treatment and medication. As the underlying viral or bacterial infection goes undiagnosed this can lead to a worsening of symptoms over time.
Children can experience mild, moderate or severe illness presentation. Those with a mild manifestation will be able to continue on with daily life and are not yet significantly debilitated. They may experience symptoms in some settings but not others such as intermittent OCD or selective restrictive eating.
Children with moderate PANS experience OCD between 50-70% of their waking hours. Their behaviour starts to affect their ability to attend school and interact with their peers. Severe symptoms occur when the child is no longer able to attend school. At this stage, they start to experience significant weight loss and become a danger to themselves and those around them.
Could my child have PANS/PANDAS?
How do I know if my child’s altered behaviour is caused by PANS/PANDAS?
It can be difficult to diagnose due to the overlap with other more common paediatric and psychological conditions. Yet, the key indicator is a coinciding or recent infection (particularly ‘strep throat’).
Children with PANS/PANDAS experience sudden obsessive compulsive disorder often combined with fussy eating. They also undergo the sudden onset of at least two of the following seven symptom categories:
- Depression or emotional instability
- Out of character irritability or aggression
- Behavioural regression
- Sudden deterioration in school performance
- Motor or sensory abnormalities
- Sleep disturbances, sudden bedwetting or increased urinary frequency
If you suspect that your child might have PANS/PANDAS, it is essential that you have them screened for Streptococcus or other viral and bacterial infections.
Treating the cause
Children with PANS often experience very slow, gradual improvement in their symptoms. It is not uncommon for symptoms to relapse and recur in affected children. Often children will experience worsening or new symptoms during the relapse phase. This will continue until the underlying infection is treated.
So how do you treat PANS/PANDAS?
Treatment includes a three pronged approach of alleviating symptoms, removing the source of inflammation and supporting the recovery of the immune system.
The viral or bacterial trigger is resolved through the use of targeted antibiotics or antiviral therapy. This is combined with immune treatment supporting the health of your child to reduce further autoimmune response. Symptoms are then targeted with complementary psychological therapy or counselling.
Natural approaches include the use of antiviral and antibacterial herbs to treat the cause of infection. Anti-inflammatory compounds such as turmeric and fish oil can be beneficial in reducing the inflammatory reaction. As always we recommend speaking with a qualified practitioner before self-prescribing supplements or herbal medicine.
Children are generally able to make a full recovery if the above treatment protocol is followed. There is a greater risk of permanent damage to the basal ganglia causing lingering symptoms if left untreated, reaffirming the need for greater awareness and investigation in this area.
How to support your anxious child
Whether you think your child may or may not have PANS/PANDAS, if your child is experiencing heightened levels of anxiety there are some actions you can take to help support them. Check out this article I wrote on 7 foods to help calm your anxious child.
Looking for complementary support to help your child though a PANS recovery? Why not get in touch to discuss options.