Has your child been acting differently since their last sore throat? Your child may have PANS or PANDAS syndrome.
They may be more hyperactive or moody than usual, developed repetitive face or body movements (e.g., blinking their eyes, shrugging their shoulders, sucking their shirt), or making repetitive noises.
They may have become obsessed with a repetitive activity or very particular about the way that they do certain things. At school, teachers say that your child is not paying attention in class, and that their handwriting has deteriorated.
What is PANDAS Syndrome?
In the early 1990s, researchers at the National Institute of Mental Health (NIMH) in the US observed that children developed a TICS disorder and/or Obsessive Compulsive Disorder (OCD) following an infection from bacteria such as streptococcus, or a viral infection such as influenza or measles. They named these cases PITANDS, for Pediatric Infection-Triggered Autoimmune Neuropsychiatric Disorders.
Research narrowed its focus by investigating children whose behaviours had been triggered by streptococcus bacteria infections in the ear, nose, throat, and chest. This condition was named PANDAS – Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus. More specifically, PANDAS concerns Group A Beta-Hemolytic Streptococcus (GABHS).
When infected, the child’s immune defences attack the Streptococcus Bacteria, that hide in the body’s tissues for survival by imitating them in a process known as ‘molecular mimicry’. Due to a genetic predisposition in some children, the immune cells are fooled and attack closely related parts of the brain in the basal ganglia. This causes a range of behavioural and emotional problems as the brain tissue is damaged.
It later became clear that there were more triggers than the GABHS) Streptococcus infection. Thus, the term PANS. (Pediatric Autoimmune Neuropsychiatric Syndrome) was created to include all infectious triggers, whether they be viral or bacterial. PANS is of sudden onset and the range of symptoms is wide. Some children develop TICS, whereas others develop OCD, and some develop both. PANS can increase the likelihood of ADHD and other disruptive behaviours and, in some cases, cause psychosis. Children with PANDAS/PANS, typically display SOME or ALL of the following behaviours:
- TICS* (repetitive vocalisations or body movements).
- Cognitive inflexibility – they are difficult to reason with (as if they are stuck on an idea).
- Obsessive, repetitive, compulsive and/or argumentative behaviours.
- Attention deficits and oppositional/defiant behaviours.
*TICS include uncontrollable movements, such as eye-blinking or shoulder-shrugging, and/or subliminal noises such as throat clearing, grunting, or repeating certain words outloud.
PANDAS, PANS AND TOURETTE’S SYNDROME
There is emerging evidence that Tourette’s Syndrome may be caused by the same mechanism as PANDAS and PANS. It is possible that both are part of a genetic disorder, which affects the function of the same brain areas.
The specific bacteria associated with PANDAS is known as Group A Beta-Haemolytic Streptococcus (GABHS). These bacteria are associated with rheumatic fever, a disease characterised by heart and joint inflammation that occurs after an untreated strep throat. Another type of rheumatic fever, with mostly neurological symptoms, is Sydenham's Chorea (also known as St. Vitus Dance). Symptoms of Sydenham Chorea can occur weeks to months after the infection, and include poor or diminished muscle control and tone, poor coordination and awkward movements of the face, body, arms, and legs.
Another strep infection is Scarlet Fever.
When infected, children may experience behavioural changes. Generally, after several weeks, all (or most) of these symptoms will go away. However, symptoms may return if the child develops another infection (detected or undetected). It has been documented that in some outbreaks of rheumatic fever, signs of a recent sore throat are absent or minimal. Thus, to prevent relapses that may be otherwise missed, doctors often treat patients with a history of rheumatic fever (including Sydenham Chorea) with a daily dose of antibiotics as a preventative measure.
Typically, a child with undiagnosed PANDAS or PANS will see a Psychologist and/or Pediatrician for therapy to address the onset or exacerbation of ADHD symptoms, or recent oppositional behaviours. Often stimulant or anti-depressant medication is prescribed, and behavioural interventions and counselling begin. As the infection subsides, and the strep antibodies reduce, the symptoms gradually decrease and both parents and clinicians believe that the interventions were successful. However, as soon as there is another strep infection, the symptoms return, and this process is repeated.
The problem here is that the brain tissues are being repeatedly damaged by antibodies; and after each re-exposure the recovery of these brain tissues becomes increasingly difficult.
With re-exposures, the child could develop a chronic behavioural disorder, or a psychiatric disorder, and become medication dependent.
At BNC, we check for evidence of a recent strep infection by requesting a special blood test that looks for Streptococcus antibodies (Serology for ASOT and AntiDNAseB). Evidence of a recent streptococcal infection may not mean that your child has PANDAS. Many children, up to 30%, will have bloodwork consistent with a recent streptococcal infection. A correlation between symptoms and a streptococcal infection does not necessarily mean that the infection was the cause of the child's behavioural changes. PANDAS or PANS does not develop in every child with an infection. Thus, we will take a careful history of the child to match their symptoms with physical evidence of a recurring infection.
Research at the National Institute of Mental Health (NIMH) needs to continue to explore whether some children are genetically predisposed to a strep infection that causes PANS or PANDAS.
For now, until we can determine the exact cause and develop preventative methods, the best we can do is ensure that PANS/PANDAS is treated. When a sore throat recurs and is correlated with behavioural symptoms, we recommend that you seek medical attention from a doctor with knowledge of PANDAS or PANS. If your child has the throat culture or Streptococcus Serology associated with GABHS strep throat, the symptoms of rheumatic fever can be prevented with antibiotics taken within nine days of the infection’s onset. It is also crucial for the child to be on a nutritional regime, in which they take supplements to repair the brain structures damaged by the antibodies, as well as specific probiotics (beneficial bacteria) to replace those that will be killed off in the gut by the antibiotic treatment.
WHAT TO LOOK OUT FOR.
Watch for changes in the child's behaviours that are unexplained or uncharacteristic, such as mood changes, clinginess, hyperactivity, inattentiveness, obsessive thoughts, cbody-hecking behaviours, repetitive noises or vocalisations, poor muscle control or coordination, fidgeting or a regression to bed-wetting. It is currently debated in the medical community whether children with this constellation of behavioural symptoms should receive long-term antibiotic treatment. This decision should be made on a case-by-case basis than weighs the risks.
PANDAS Disease Treatment at BNC
When PANDAS or PANS meets the diagnostic criteria, Dr Nastasi at BNC may prescribe a specific antibiotic treatment for a short period (every time an episode of infection is confirmed). At the same time, our clinical nutritionist will recommend ongoing nutrient supplementation to promote healthy brain cell plasma membranes and brain tissues. These nutrients will promote brain tissue recovery and provide some protection against the development of psychiatric disorders. Based on evidence, we hypothesis that there is a recovery period post-infection (as the antibodies reduce to normal. It is our belief that supplementing the brain with nutrients during this period will reduce further damage by the antibodies. Nutrient supplementation is a common sense approach to a medical problem that has no proven medical solutions yet.
At BNC, our results are encouraging. QEEG regularly demonstratse significant improvements in children with a history of PAN/PANAS, as well as clear behavioural improvements.
Dr. Jacques Duff and Dr. Joe Nastasi presented the clinic’s research data at the International Society for Neuronal Regulation Scientific Seminar, in Sydney in September 2004.
IS THERE A TEST FOR PANDAS AND PANS?
Clinicians use diagnostic criteria for the diagnosis of PANDAS or PANS (see below). Currently, clinical features of the illness are the only means of determining whether a child might have PANDAS or PANS. A Streptococcus Serology,(ASOT and anti DNAseB), or throat swab, may also confirm a recent GABHS infection. These tests help confirm the involvement of Streptococcus and a diagnosis of PANDAS. There is no test for PANS itself. The Cunningham protocol (a test for various antibodies) is also used for PANS diagnosis but is insufficient alone.
Diagnostic Criteria For PANDAS & PANS Syndrome
There are two main criteria for Pandas Diagnosis:
- Presence of clinically significant obsessions, compulsions and/or TICS.
- Unusually abrupt symptom onset or a relapsing-remitting course of symptoms.
During both the initial onset and subsequent recurrences, symptoms ‘explode’ in severity overnight, reaching maximal impairment in 24 to 48 hours.
Between episodes, these symptoms usually decrease significantly and occasionally resolve completely. The following figure illustrates this episodic course:
PANDAS or PANS is diagnosed if there is an episodic history of the following symptoms, associated with an infection:
- Presence of obsessive-compulsive disorder and/or a TIC disorder.
- ADHD symptoms or oppositional behaviours.
- Neurological abnormalities (motor hyperactivity, or adventitious movements, such as choreiform movements).
- Pediatric onset of symptoms (age 3 years to puberty).
- Episodic course of symptom severity i.e., symptoms come and go.
- Association with group A Beta-hemolytic streptococcal infection (GABHS).
- GABHS evidenced by either a positive throat culture for strep or a positive result for streptococcus serology (ASOT or AntiDNAse-B).
- A history of Scarlet Fever or Rheumatic fever
PANS PANDAS Symptoms
Children with PANDAS or PANS have dramatic ups and downs in their OCD and/or TIC severity. TICS or obsessive-compulsive behaviours that are consistent every day level does not represent an episodic course. Many children with OCD or TICS have good days and bad days, or even good weeks and bad weeks. The difference is that in children with PANDAS/PANS the onset is very sudden, with a sharp worsening in symptoms, followed by a slow, gradual improvements. If they acquire another infection, their symptoms will suddenly worsen again. Symptoms usually persist for at least several weeks but may last several months or longer. The TICS or obsessive behaviours will seem to gradually fade away, and the children will often enjoy a few weeks or months without problems. However, in the advent of another infection, the TICS or OCD will return just as suddenly and dramatically as they did the first time.
What Does An Elevated Anti-Streptococcal Antibody Titer Mean?
An elevated anti-streptococcal titer (such as an ASOT or an AntiDNAse-B) means the child has had a strep infection sometime in the past few months, since the antibodies that fought the streptococcus bacteria are present. All healthy people create antibodies to fight infections.
These antibodies stay in the body for some time after the infection is gone. However, the amount of time that the antibodies persist varies greatly between individuals. Some children have ‘positive’ antibody titers for months after a single infection, which may have little to do with their worsening symptoms. Instead, this elevated anti-streptococcal titer indicates a long-since healed streptococcus infection.
PANS or PANDAS in Adults
By definition, PANDAS and PANS are pediatric disorders. Yet it is possible that adolescents and adults have immune-mediated OCD or TICS. Whilst the research in this area remains limited, there are some reported cases of adolescent and adult-onset OCD and TICS, associated with GABHS and even non-hemolytic streptococcus infections.
Will Antibiotics Treat PANDAS?
Some antibiotics can kill streptococcus and other types of bacteria that may trigger PANS or PANDAS. However, the antibodies produced by the body in response to the streptococcus infection are the cause of the problem, not the bacteria itself. Thus, one cannot expect that antibiotics (such as penicillin) will directly treat the symptoms of PANDAS/PANS.
The symptoms will only reduce when the antibodies reduce, and the tissues begin to heal. For this process to take place, the child will require adequate nutrients to repair brain tissues. Whilst antibiotics may help, if PANS is caused by a virus, antibiotics will be ineffective.
The NIMH in the United States recommends the use of antibiotics as a form of prophylaxis for the prevention of reoccurring PAN/PANDAS.