Susan Swedo, a former paediatrician at the U.S. National Institutes of Health (NIH), was the first to draw a connection between a syndrome called PANDAS and strep throat infections, which leads to obsessive-compulsive disorder (OCD) and tic disorders such as Tourette’s syndrome in a child.¹
By her estimate, this condition affects up to 1 in every 200 children.⁴
At OT&P Healthcare, we have recently seen an increase in children presenting with symptoms of OCD and tics. Some of the common factors are frequent mood swings, anxiousness and sudden bodily movements or tics. The key classical presentation is a sudden onset of or sudden worsening of symptoms. However, a child can fully recover from PANDAS with proper diagnosis and treatment.
In this blog, we will help you to understand more about this often misdiagnosed autoimmune condition.
What is PANDAS/PANS?
PANDAS, or Paediatric Autoimmune Neuropsychiatric Disorder associated with Streptococcal infections is triggered by a misdirected immune response resulting in brain inflammation. As the name suggests, this is due to exposure to a bacteria called Streptococcus Pyogenes, a common cause for “strep throat” and scarlet fever. There is a larger umbrella term, Paediatric Acute-onset Neurological Syndrome - PANS, defined by a severe onset of unexplainable symptoms of OCD and / or tics in response to any infection. Apart from Streptococcus Pyogenes, another common cause in Hong Kong is Mycoplasma Pneumoniae. PANDAS and PANS are most likely to develop in children between 3 and 15 years old.
These disorders maybe overlooked, partly because of the assumption that there is no underlying medical cause for the child’s psychiatric symptoms and that, currently, there is no definitive test. PANDAS and PANS are clinical diagnoses based on a collection of signs, symptoms, medical history and laboratory findings that any other neurological or medical disorders cannot explain.⁵
How do children get PANDAS/PANS?
Identified in the 1890s at Great Ormond Street Hospital, London UK, PANDAS was first known as Sydenham’s Chorea. This condition is thought to result from autoimmune antibodies mistakenly attacking an area of the brain known as the basal ganglia, rather than the intended infectious agent.
Strep bacteria are ancient organisms that survive in a human body under the disguise of a normal cell, which shields them from our immune system. They do this by putting molecules on their cell wall that they look nearly identical to molecules found on the child’s own heart, joint, skin and brain cells. This hiding technique, known as ‘molecular mimicry’, allows strep bacteria to evade detection. However, when the body eventually recognises the bacteria as foreign, the child’s immune system produces antibodies.
Studies at the National Institute of Mental Health (NIMH)³ show that these newly produced cross-reactive antibodies often mistakenly attack the cells that this strep is imitating and end up causing inflammation and, when occurring in the brain, give rise to the typical OCD, motor tics, and other neuropsychiatric symptoms of PANS / PANDAS.
In addition a Yale University research paper published in the American Journal of Psychiatry, in June 2020 identified antibodies that bind to particular brain cells called interneurons.⁶ They found that many children with PANDAS possess high levels of an antibody that can attack specific interneurons – neurons that modify the signalling of other nearby cells.⁶
OCD symptoms in children
A dramatic change in your child’s personality is often the first symptom. Parents describe behavioural changes that happen ‘overnight’ or ‘out of the blue’. The abrupt change to their personality and behaviour often closely follows a strep throat infection, although it may be ‘silent’.
Often the affected child will have intrusive and unpleasant thoughts that they cannot put out of their mind or an urge to repeat specific actions repeatedly.
PANDAS/PANS may also cause motor tics – a sudden uncontrollable jerky movement or verbal tics, such as repeating random phrases and syllables. A child may also blink a lot or jerk their head. They may grunt or clear their throat constantly. If your child already has OCD or tics, this will heighten the effect of the PANDAS/PANS.
In addition to these symptoms, other PANDAS/PANS-specific symptoms may include:
- Hyperactivity, fidgeting, and trouble paying attention including symptoms of ADHD
- Anxiety attacks or fear of being away from parents or caregivers (severe separation anxiety)
- Return of behaviour they had grown out of, like temper tantrums or baby talk
- Sensory problems, including being very sensitive to light and possibly seeing or hearing things that are not there
- Sleep problems
- Bed-wetting, urination more often during the daytime, or both
- Eating disorders, for example: anorexia
- Acute handwriting difficulty
These symptoms will often tend to be episodic².
Are PANDAS/PANS treatable?
In short PANDAS and PANS are treatable, with the response being better the earlier the treatment is started.
Treating this syndrome involves addressing physical and psychiatric symptoms – a combined treatment from a functional medicine doctor and a child psychologist familiar with OCD and PANDAS/PANS.
The doctor will first ensure the elimination of strep infection by treating it with antibiotics and anti-inflammatory agents. Both streptococcus and Mycoplasma Pneumoniae infections can usually be treated with the antibiotic Azithromycin. The anti-inflammatory agents can be Non-Steroidal Anti-Inflammatory Drugs (NSAID) such as Ibuprofen or natural treatments.
Antibiotics and anti-inflammatory agents may also improve psychiatric symptoms, but they must be addressed separately. A child psychologist will usually use Cognitive Behavioural Therapy (CBT). It is important to reassure a child that intrusive or unpleasant thoughts are not a part of their typical character and that they will settle with treatment.
If a child gets the infection again, PANDAS and PANS symptoms may return, requiring more treatment with anti-inflammatories and antibiotics.
What should I do as a Parent, if I suspect my child has PANDAS/PANS?
If your child shows unusual symptoms after infection, immediately make an appointment with your doctor. It will also be helpful to keep a journal detailing these symptoms, including when they started and how they affect your child’s life. Bring this information and a list of any prescription or over-the-counter medications your child has recently taken when you visit the doctor. Be sure to report any infections or illnesses that have been going around at school or home.
Even though there are no long-term studies on PANDAS/PANS, it does not mean your child cannot get better.
Some children improve quickly after starting antibiotics, with limited possibility of reinfection. Most recover without significant long-term symptoms. For some, it can become an ongoing problem requiring periodic use of antibiotics to control infections that may cause flare-ups.
It is essential to sterilise or replace toothbrushes during and after the antibiotic treatment to ensure that the child is not reinfected with strep. It might also be helpful to ask a healthcare provider to perform throat cultures on the child’s family members to ensure that none are ‘strep carriers’, which could be a source of the strep bacteria.
Help at OT&P
At OT&P Healthcare, we have a dedicated team of healthcare professionals who can help you understand these symptoms and recommend a suitable treatment for this disorder. Our child psychologists and functional medicine doctors are knowledgeable to answer any questions you might have.
1. Brendan Borrell. (2020). ’How a controversial condition called PANDAS is gaining ground on autism’, Spectrum News. 8th January. Available at: <https://www.spectrumnews.org/features/deep-dive/how-a-controversial-condition-called-pandas-is-gaining-ground-on-autism/>
2. Graziella Orefici, PhD, Francesco Cardona, MD, Carol J. Cox, PhD, and Madeleine W. Cunningham, PhD. (2016). ’Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS).’ National Center for Biotechnology Information [NCBI]. 10th February. Available at: <https://www.ncbi.nlm.nih.gov/sites/books/NBK333433/>
3.’PANDAS – Questions and Answer.’ National Institute of Mental Health [NIMH]. Available at: <https://www.nimh.nih.gov/health/publications/pandas/index.shtml#:~:text=PANDAS%20is%20short%20for%20Pediatric,strep%20throat%20or%20scarlet%20fever.>
4. ’PANDAS/PANS Prevalence.’ Pandas Network Org. Available at: <http://pandasnetwork.org/statistics/>
5. ’Diagnosis’. Pandas Network Org. Available at: <http://pandasnetwork.org/diagnosis/>
6. Bill Hathaway. (2020). ’Yale scientists propose explanation for baffling form of childhood OCD’. Yale News. 16 June. Available at:<https://news.yale.edu/2020/06/16/yale-scientists-propose-explanation-baffling-form-childhood-ocd>
7. Miro Kovacevic, MD, Paul Grant, MD and Susan E. Swedo, MD. (2015). ’Use of Intravenous Immunoglobulin in the Treatment of Twelve Youths with Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections’. National Center for Biotechnology Information [NCBI]. 1st February. Available at: <https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4340809/>