Nieman: Childhood behavioural disorder is under-known and hard to diagnose

The opposite of the comical black and white bears, medical PANDAS are not at all entertaining.

The childhood disorder remains a puzzling problem for many parents, children and sometimes even their doctors – especially when it is diagnosed late.

It’s a condition which suddenly impacts a child’s behaviour. It is as if the child wakes up one day a different person – some call it a Dr. Jekyll and Mr. Hyde situation. (In 1866, Robert Louis Stevenson wrote a novel about strange occurrences between a Dr. Jekyll and a murderous criminal named Edward Hyde. It has become a vernacular which deals with how the same person can be both good and evil.)

PANDAS is an acronym for Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections. It has only been known since the mid-1990s when the National Institute of Mental Health brought awareness and recognition to it. Scientists estimate that it may be as common as one in 200 children. It affects children from age three to puberty.

The assumed mechanism by which it creates havoc only in some patients is via a patient’s immune system which responds to a streptococcal infection excessively. It is thought that the antibodies, created in response to this infection, end up getting through the blood-brain barrier, and then impact areas which control things like mood, emotions, behaviour, cognition and sensations. As result, the brain is targeted, and patients present with a wide variety of psychiatric symptoms and behavioural abnormalities in a sudden, unexpected manner.

Patients may suddenly pivot from being normal to having moodiness, anxiety, behavioural regression, sleep disturbances, irritability, aggression, obsessive-compulsive behaviours, ADHD-like symptoms, tics and restrictive eating. Some experience a sudden decrease in handwriting and math skills.

These symptoms may manifest very shortly after a streptococcal infection. This infection, often known as “strep throat”, is due to bacteria in the upper airway which is typically diagnosed via a throat swab.

The above description of PANDAS may sound simple but, in real life, the presentation and diagnosis can be difficult, controversial and confusing. Not all clinicians are aware of PANDAS – or if they are aware they may feel it is often over-diagnosed. The wide spectrum of symptoms can be non-specific. Because of the acute onset and the ever-increasing lack of primary care doctors – some of whom may not even be fully aware of PANDAS – a great number of children are diagnosed late.

As a result, the ripple then extends far beyond the walls of a primary care doctor’s clinic: The child who is diagnosed late may then be sent to a pediatrician for a second opinion – this takes time; the pediatrician may involve a psychologist because psychiatrists are hard to find; not all families can afford to pay the psychologist; the pediatrician may call an infectious disease doctor and be told that it will be more appropriate to see a neurologist; to see a neurologist takes time.

Meanwhile, some families are confused and exasperated, with good reason. They may Google resources and find clinicians who promote themselves as PANDAS experts. Some of these experts are very good but have long wait times. (It is not uncommon for these experts to have had personal experience with their own children or families where they were told PANDAS does not exist in a rather dismissive manner. They then end up as advocates for PANDAS patients.)

Treatment involves antibiotics when the throat swab is positive for the infection. If the diagnosis is made early, antibiotics and anti-inflammatory medication may be the only treatment needed. Usually, it takes between four to six weeks to see a definite improvement.

Because swabs are not always definitive, patients may be subjected to a number of blood tests where clinicians search for antibody levels that keep on rising. These are known as ASOT titers – a fourfold increase may be helpful to confirm the diagnosis.

Thorough clinicians may also want to rule out other conditions where there is an awkward “dance” between the immune system and the brain. The point is that PANDAS does not always come in a neat package with a fancy red ribbon tied on the top.

Assuming the diagnosis is made late, the issue can become a mental marathon. It may not be unusual to embark on the use of anti-depressants (SSRIs). PANDAS patients may be very sensitive to SSRIs and the ideal is to start at a low dose, in case side effects may surface. The treatment of OCD may involve cognitive behavioural therapy, but only for those who can afford to give a credit card or write a cheque to the psychologist. Trying to see a psychologist via publicly funded health care is improbable and farcical.

Parents who may want to educate themselves further can visit?www.pandasnetwork.org

To make sure I stay current, I have found this resource helpful: www.pandaspn.org

Dr. Nieman is a community-based pediatrician in Calgary.
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