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 the number of 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 that there is a sudden onset of or sudden worsening of symptoms. However, with proper diagnosis and treatment, a child can make a full recovery from PANDAS.
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 inflammation of the brain. 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, which is defined by a severe onset of unexplainable symptoms of OCD and / or tics in response to any infection. Apart from the aforementioned Streptococcus Pyogenes, another common cause in Hong Kong is Mycoplasma Pneumoniae. PANDAS and PANS are most likely to develop in children between the ages of 3 and 15 years.
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 cannot be explained by any other neurological or medical disorders.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 is known as ‘molecular mimicry’ and allows the strep bacteria to evade detection. However, when the bacteria are eventually recognised as foreign by the body, the child’s immune system reacts by producing 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
What are the symptoms?
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 this infection may be ‘silent’.
Often the effected child will have intrusive and unpleasant thoughts that they unable to put out of their mind or an urge to repeat certain actions over and over again.
PANDAS/PANS may also cause motor tics – a sudden uncontrollable jerky movement or verbal tics, such as repeating random phrases and syllables over and over. 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.
Is 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 both the physical and psychiatric symptoms – meaning a combined treatment from a functional medicine doctor and a child psychologist who is familiar with OCD and PANDAS/PANS.
The doctor will first ensure to eliminate the strep infection by treating it with a combination of antibiotics along with 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.
Psychiatric symptoms may also start to improve with the antibiotics and anti-inflammatory agents, but they still need to be addressed separately. A child psychologist will usually use Cognitive Behavioural Therapy (CBT). It is important to reassure a child that any intrusive or unpleasant thoughts are not a part of their normal character and that they will settle with treatment.
PANDAS and PANS symptoms may return if a child gets the infection again, which will require 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 of any kind, make an appointment with your doctor right away. It will be also helpful to keep a journal detailing these symptoms, including when they started and how they’re affecting your child’s life. Bring this information, along with 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 important 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 make sure that none are ‘strep carriers’, who could serve as 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.
Call our functional medicine team member, Jenny Wang, to find out more at 2180 2713. You can also email us here.
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/>