Uncovering PANS: read Poppy’s story

When Poppy, a healthy, happy child started experiencing obsessive thoughts and anxiety seemingly overnight, her parents were confused and worried. There was another minor change in her behaviour too – a constant clearing of her throat.

None of it made sense to Poppy’s parents. They wanted to help, but couldn’t figure out what had happened to cause this sudden change. So, they sought Naturopathic Doctor, Benita Perch’s help.

When Dr Perch found out that their house in Thailand was recently flooded, she connected the dots. Poppy had PANS – a collection of symptoms triggered by infection or toxins.

PANS (Paediatric Acute-onset Neuropsychiatric Syndrome) causes an autoimmune response, leading the immune system to attack the brain. PANDAS is a subgroup of PANS, specifically triggered by strep A.

The most common symptoms experienced are verbal and physical tics, and symptoms of OCD.

Poppy’s tic was almost imperceptible – the clearing of her throat. “Sometimes symptoms of PANS aren’t loud. They may often go missed if parents or doctors aren’t paying careful attention,” explains Dr Benita.

In kids with sudden (acute) onset of OCD, 86% are linked to strep infection. Schoolkids get around 2-3 cases of strep A infections each year. Not every case leads to PANDAS, but when it does, it’s important to get the right diagnosis and treatment.

Though PANS is not curable, it is treatable, and speedy diagnosis and treatment are key factors in kids making a full recovery.

Dr Benita tested Poppy for mould, bacterial imbalance in the gut and mycoplasma – a chronic infection that causes neuroinflammation. Her test results came back, and she was positive for all three.

Dr Benita worked with a GP to confirm a diagnosis. Today, Poppy is back at school, and on the road to recovery.

What are the symptoms of PANS?

PANS usually occurs between the ages of 3 up to puberty – but in some cases can occur during adolescence. PANDAS is most common among 4-9 year olds, 69% report the age of onset during this period.

Symptoms usually have an acute onset – meaning they occur suddenly and develop quickly. These symptoms are specific to each child.

The most common include verbal and physical tics and behavioural changes that appear similar to OCD.

Typically we think of OCD as an intense need to be clean – but it can manifest in a variety of ways.

Dr Benita shares the nuance of obsessive thoughts . “A child who came to me with PANS was struggling to sleep, because she felt she needed to pee every night, and felt as though she was wet. Obsessive thoughts don’t always come in the same form. It’s important if you notice a change in your child’s behaviour to get them checked out, just to be sure.”

Those with OCD have obsessive thoughts and perform compulsive behaviours to relieve the presenting fear or anxiety. Hand washing and asking for constant reassurance are common compulsions in PANS.

Often, kids with PANS are restrictive or avoidant of food. They may be scared they’ll vomit, choke, or become ill. Being restrictive is an example of compulsive behaviour.

Kids may begin regressing – struggling with schoolwork they were previously acing, and losing skills. They may have poor co-ordination, balance, handwriting, or wet the bed.

Problems with sleep and sensory sensitivity are also common.

Symptoms usually follow a cycle, during which they worsen intensely over a short period, followed by a period in which they slowly seem to recover, before intensifying again.

Why hasn’t my doctor suggested PANS as a diagnosis?

When faced with symptoms of OCD in children, doctors in traditional medicine may focus on the mind. They overlook factors like mould toxicity – a key environmental factor for PANS.

Other causes of PANS include Covid, viruses, gut infections and mycoplasma.

Kids with PANS often have additional accompanying conditions, like candida overgrowth due to gut infections.

Children who are asymptomatic for strep A usually go undiagnosed. Without a diagnosis of infection, doctors are less likely to diagnose PANS.

Adding to the difficulty of diagnosis is the fact that some medical professionals still don’t recognise PANS as an autoimmune condition. Though there is growing research into the area, medicine is lagging behind the lived experiences of those with PANS and PANDAS.

Kids with PANS may be misdiagnosed with typical OCD, ADHD, Tourette’s, anxiety or other mental health conditions.

A diagnosis of PANS is key, as PANS won’t respond to typical mental health treatment routes. These symptoms must be treated as an autoimmune condition.

Do symptoms of PANS have to be sudden?

Most manifestations of PANS occur rapidly, but for some, the onset may be more subtle.

Symptoms at the beginning may be mild, or seem developmentally appropriate. Kids may feel anxious to be away from parents, or wetting the bed.

Why do some kids get PANS and others don’t?

Scientists aren’t sure what causes some kids to develop PANS, while others have a healthy recovery after infection.

Specific strains of strep A (there are over 120) are theorised to cause PANDAS.

Anecdotal evidence shows that 70% of the kids who develop PANDAS have a family history of autoimmune conditions. This suggests genetics may be the cause. Research shows kids with PANDAS often have familial history of scarlet fever and / or rheumatic fever. Strep A causes these conditions, supporting the theory of genetic vulnerability.

Naturopathic doctor, Benita Perch, shares that “Genetic susceptibility to toxins may be a factor, as can a propensity for inflammation. We can test to check if your child is vulnerable to these contributing factors.”

Diagnosing PANS

While PANDAS is not curable, many kids make a full recovery. But the success of treatment is dependent on the speed of treatment – making a quick diagnosis a key part of the process.

Our naturopaths are skilled in connecting the dots necessary to diagnose PANDAS. They use industry-leading tests to identify what kind of infection may be causing your child’s symptoms.

References

Child Mind Institute – Complete Guide to PANS and PANDAS

PANDAS Network – What is PANDAS?

Leave a Reply

Your email address will not be published. Required fields are marked *

error: Content is protected !!
Share via
Copy link
Powered by Social Snap