If your child has suddenly developed anxiety, obsessive compulsive disorder or tics then this is the podcast and blog for you. I was thrilled to be interviewed by actress Jo Joyner on her PANS PANDAS Stories podcast, which she co-hosts with her journalist friend Lucy McDonald. Jo and I talked about environmental triggers & gut microbiome imbalances which can drive these autoimmune neuroinflammatory conditions.
What are PANS and PANDAS?
PANS (Paediatric Acute-onset Neuropsychiatric Syndrome) and PANDAS (Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) are psychiatric conditions which affect the neurological system and the brain leading to a significant change in a child’s mood and behaviour. The symptoms can wax and wane, and episodes of the PANS or PANDAS symptoms, known as flares, can be triggered by a misdirected immune response.
PANS flares can be brought on by a variety of different bacterial and viral infections as well as environmental pollutants such as mould. Whereas a PANDAS flare is specifically brought on by a streptococcus infection such as strep throat, tonsillitis or scarlet fever. Both PANS and PANDAS can affect children and young adults and the average onset is around 9 years old. The child is usually seemingly perfectly happy, healthy and well prior to the onset of the flare and there is a rapid and marked change in them.
These conditions are thought be an autoimmune reaction within the brain. This means that when a child is exposed to a viral or bacterial infection, the body’s immune system mistakenly attacks the basal ganglia at the back of the brain, instead of fighting the infection in the normal way. It can lead to an inflammatory cascade affecting the function of the basal ganglia and sometimes other areas of the brain close by. The role of the basal ganglia is to control movement, executive function, behaviour and emotions.
PANS PANDAS symptoms
The symptoms vary from child to child, and the hallmark is usually an abrupt, acute or dramatic onset of symptoms (usually within 24-48 hours) and it seems as if your whole child’s character has changed “overnight”. However, it is becoming more apparent that there are some kids where the neural inflammation is more constant and chronic and so there can be background of lighter symptoms that they experience daily, even when not going through a marked flare.
The first symptoms of a PANS or PANDAS flare are usually obsessive-compulsive disorder (OCD) or severely restricted food intake (lack of appetite, narrowing of food choices, body dysmorphia or disordered eating). On top of these two main symptoms, other symptoms can come alongside which are not better explained by an already established neurological or medical disorder. These include:
- Anxiety, including heightened anxiety, separation anxiety, irrational fears or panic episodes.
- Tics or twitches to include eye blinking, throat clearing and jerky hand movements or finger movements as if playing the piano.
- Emotional lability where there are strong emotions or feelings such as uncontrollable laughing or crying, heightened irritability or severe meltdowns.
- Depression, feeling flat or a low mood.
- Aggressive or violent behaviour or thoughts.
- Severe oppositional behaviour such as being uncooperative, defiant, and hostile towards parents, siblings, teacher or friends at school.
- Behavioural or developmental regression such as an increase in temper tantrums, loss of age-appropriate language (baby talk) and clingy behaviour not related to anxiety.
- Sudden deterioration in school performance due to difficulties with memory, visuospatial skills, concentration, hyperactivity and impulsivity.
- Motor or sensory changes including dysgraphia (a regression in handwriting or drawing), clumsiness, and new sensory sensitivities to light, noise, smell, taste or texture.
- Difficulty getting to sleep, insomnia and/or sleep disturbances.
- Bed wetting and/or urinary frequency.
- Whilst not part of the formal diagnostic criteria, in approximately 25% of cases there have been reports of psychosis and/or hallucinations.
It has been postulated that the specific symptoms your child experiences can depend on which parts of the brain are affected, and the severity of symptoms can be in-line with the level of inflammation and antibodies that the immune system has built up in response to the infection. However more research is needed to clarify this.
The OCD symptoms can vary quite a bit and so I thought would share these so that the OCD can be spotted more easily. Obsessions and compulsions may include any of the following, and it is important to realise that these thoughts and behaviours are not in the child’s control:
- Contamination obsessions and compulsions such as washing hands or touching anything dirty.
- Obsessions that harm will come to themselves or others such as health anxiety or a car crash.
- Out of the blue sexual or religious obsessions.
- Repeating compulsions such as repetitive thoughts, words as well as behaviours.
- Symmetry and exactness obsessions such a lining up or being fixated on certain positions of objects.
- Ordering/arranging compulsions when nothing can be out of place and things need to be done in exactly the right way.
- Counting compulsions – for instance everything needs to be done in 4s (4 taps on the door, eating 4 strawberries etc). Equally anything occurring in 4s can also be a catastrophe to some and needs to be avoided at all costs.
- Checking obsessions or compulsions such continuously checking a door is locked or a tap is turned off for fear of being burgled or a flood.
- Excessive reassurance seeking from relatives, teachers and friends.
- Need to touch, tap or rub people or objects to feel calm.
- Intrusive images, words, music or nonsense sounds in their head that won’t go away.
- Ritualised eating patterns such as eating the same food every day or in a certain way.
Testing, treatment and support
The best way to test to see if streptococcus is the key trigger for a PANDAS flare is via a blood test. This should look at two streptococcus antibodies: Antistreptococcal/ antibody titres (ASOT) also known as Antistreptolysin O (ASLO); as well as Anti-DNase B (DNase) antibody titres. ASOT antibodies rise sooner after the initial infection and DNase take a bit longer to rise and fall. This means ASOT is a better measure for recent exposure and DNase is better for more chronic infections. ASOT is measured in steps of 200 units per millilitre. A reading of 200 or less is generally seen as negative and 400 or above is seen at positive. I have seen this as high as 1,600 in some cases. The higher numbers seem to correlate with more marked symptoms, but this is not always the case and a child can still be struggling massively at a level of 400.
If you find the right doctor, medical treatments for this include nonsteroidal anti-inflammatories (ibuprofen) and antibiotics and they can often work quite fast. It is thought that only about 10% of UK-based GPs (medical doctors) are knowledgeable about PANS or PANDAS and therefore may not help or prescribe. This is where seeking out a PANS PANDAS specialist is important and there are a handful of private options in the UK.
In some cases, a PANS or PANDAS flare maybe a one-off occurrence, and the inflammation does right itself on its own over several weeks or months and the child can return to their old happy self. However very often the symptoms ramp up again when the child is exposed to another infection and sometimes more help is needed to break the cycle of symptoms. During a flare and when the inflammatory cytokine storm is active, the child can experience a plethora of character and mood changes that can be very upsetting and alarming.
From our clinical practice we find that kids and young adults with co-morbidities such as hypermobile joints, atopy (eczema, asthma, hay fever and allergies), chronic gut issues or have another autoimmune or inflammatory condition are more susceptible and we often find that these get worse when the child is experiencing a flare.
Many neurodivergent kids with dyslexia, dyspraxia, sensory processing, Tourette’s, ADHD or autism are also susceptible to these neuroinflammatory autoimmune flares which can dysregulate them and magnify any background anxiety and challenging behaviours. It is harder to differentiate whether their symptoms are part of their overall neurodivergent picture, and this is where running laboratory tests and getting personalised support can really help to guide the parent with how to help the child get back to baseline.
Paradoxically you may not know that your child has had an infection at all, as when the autoimmunity is deep-set, they tend not to experience fevers and sore throats, and you might just see an out of the blue change in mood and behaviour instead. It can be a family member or a classmate who is the carrier of the triggering infection, so you need to be a bit of a detective and consider if your child’s symptoms came on when you or one of their siblings got sick, or find out if strep throat or scarlet fever is doing the rounds in the classroom.
In cases of chronic PANS, it is not always just a clear cut infection-mediated response. Sometimes there can be a background environmental sensitivity such as autoimmune reactions to mould or a build up of mycotoxins (toxins from mould) in the system. Yeast overgrowth in the gut can also produce more chronic symptoms. Tick-borne infections such as Borrelia (which leads to Lyme Disease) and Bartonella can also play a role and need to be ruled out when the more conventional medical approaches are not touching the sides of the symptoms.
When they are flaring frequently or cannot get out of a flare easily using the medical approach, this is where nutritional therapy using the functional medicine approach can help to reset the immune system over time. It involves running some lab tests to get an understanding of why the immune system is so out of sync and this can involve a urinary organic acid and amino acid test to check for nutrient deficiencies, gut health, cellular inflammatory activity and oxidative stress. Depending on the child’s health history other tests such as a gut microbiome test or a mycotoxin test for mould exposure may also be warranted. We then work on their nutrition, gut health and metabolic health to reset the immune system. Generally, we find that the flares are less frequent, last for less time and are not so invasive when you adopt this approach.
To learn more about PANSPANDAS check out the PANS PANDAS UK charity website. The leading paediatric medical team in the UK supporting children with autoimmune neuroinflammatory conditions is The Children’s e-Hospital, and I am part of their medical advisory group. To learn more about the effect of strep on the immune system and natural remedies for strep see my other blogs about strep and PANDAS.
Our NatureDoc PANS PANDAS specialists can help to work in conjunction with medical professionals to support your child with PANS PANDAS. We can arrange blood antibody tests for a wise range of infections as well as more comprehensive tests for mycotoxins, leaky gut and gut dysbiosis of the microbiome, histamine intolerance, dysregulated methylation and more. With 1 to 1 personalised support we can help to establish the root cause of the autoimmunity and gradually help to heal your child’s immune system naturally.
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- National Institute of Mental Health – PANDAS
- Streptococcal Infections and Exacerbations in PANDAS
- Pediatric autoimmune neuropsychiatric disorders associated with Streptococcus infections
- PANDAS—Questions and Answers
- Clinical Presentation of Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections in Research and Community Settings Susan E. Swedo et al.
- Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS) Graziella Orefici, PhD et al.
- Gut Microbiota Profiling and Gut–Brain Crosstalk in Children Affected by Pediatric Acute-Onset Neuropsychiatric Syndrome