Paediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus.

Have you noticed how different your child has been acting ever since he had that sore throat? He seems hyperactive, moody and keeps blinking his eyes. He also has become very particular about the way he does certain things. His teachers say that he's not paying attention in class and they're having trouble reading his handwriting.

Your child may have developed what the medical community has named PANDAS. Although rare, PANDAS stands for Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcus. What does all that mean? Basically, it means that when the body's defences are trying to attack the Streptococcal bacteria causing the sore throat, there is some degree of mistaken identity and it also attacks some parts of the brain.

The autoimmune attack is thought to occur on closely related parts of the brain, causing a range of behavioural and emotional problems. When first discovered PANDAS was linked to obsessive-compulsive disorder, Tics and Tourettes syndrome. Mostly because these abnormal behaviours are overt and easily recognised.

Tics can be uncontrollable movements, such as eye-blinking or shoulder-shrugging, or automatic noises such as throat clearing, grunting or saying certain words repeatedly. More recently PANDAS has been associated with a wider range of related behaviours. Affected children can have any combination of the following symptoms: The bacteria associated with this disorder are known as Group A Beta-Haemolytic Streptococcus (GABHS). They are also the bacteria associated with rheumatic fever, a disease characterised by heart and joint inflammation that can occur after an untreated strep throat. A type of rheumatic fever with mostly neurological symptoms is Sydenham's chorea (also known as St. Vitus Dance). Symptoms of Sydenham chorea may occur several weeks to months after the infection and may include poor or diminished muscle control and tone, poor coordination and awkward movements of the face, body, arms and legs.

Children may also have changes in their behaviours. Generally, after several weeks, all or most of the symptoms go away and may return if the child develops another Strep throat infection (detected or undetected). However, in a number of cases recent outbreaks of rheumatic fever, signs of a recent sore throat were absent or minimal. To prevent relapses, doctors will treat patients with a history of rheumatic fever (including Sydenham chorea) with a daily dose of antibiotics as a preventative measure against future infections.

Typically, a child with undiagnosed PANDAS may be taken to the Psychologist and/or Paediatrician for treatment of an onset or exacerbation of ADHD symptoms, oppositional behaviours or OCD. Stimulant or anti-depressant medication may be prescribed and/or a behavioural intervention or counselling initiated. As the infection passes and the strep antibodies reduce, the symptoms gradually subside and parents and clinicians believe that the intervention was successful. However then there is another strep infection, the symptoms return and the process is repeated. The problem is that the brain is being continuously damaged by the repeated attacks by streptococcus antibodies; and after each attack the recovery of damaged brain tissues may not be as complete as we would hope. Eventually the child may develop a chronic psychiatric disorder.

At the clinic, we check for evidence of a recent strep infection by ordering a special blood test that looks for Streptococcus antibodies (Serology for ASOT and AntiDNAseB). Evidence of a recent streptococcal infection may or may not mean that your child has PANDAS. Many children, up to 30 percent, will show evidence by blood test of a recent streptococcal infection. So connecting symptoms with a streptococcal infection will not necessarily mean that the infection was the cause of the child's behaviour change. PANDAS will not develop in every child with a strep infection.

Research is currently being done at the NIMH to find out whether the select few are genetically predisposed, or perhaps were exposed to a special strain of Strep. But for now, until we can determine the exact cause and catch it before it acts, have your child properly treated. When a sore throat persists, seek medical attention from a doctor experienced in PANDAS. If your child does have GABHS strep throat, as determined by a throat culture, the symptoms of rheumatic fever could be prevented if a course of antibiotics is taken within nine days of the onset of the infection. We believe that it is important to put the child on specific nutrient supplements that target brain structures and the right probiotics (beneficial bacteria) to replace the ones that antibiotics kill in the gut.

Watch for changes in the child's behaviours that are unexplained or out of character, such as mood changes, clinginess, hyperactivity, inattentiveness, obsessive thoughts, checking behaviours, repetitive noises or vocalisations, poor muscle control or coordination, ants in the pants movements or even new-onset bedwetting. At this time, this constellation of symptoms is under research investigation and it is not recommended that children with behaviour symptoms receive long-term treatment with antibiotics.

PANDAS treatment at the Behavioural Neurotherapy Clinic When PANDAS is suspected due to the diagnostic criteria being met, we hypothesise that a short period on antibiotics (every time an episode of GABHS infection is confirmed) concurrent with and followed by ongoing nutrient supplementation to promote optimum Brain cell plasma membranes and Brain tissues may help brain recovery and protect against the full development of serious chronic psychiatric disorders. Based on evidence that there is a recovery period (as the GABHS antibodies reduce to normal) after the strep infection is over, we hypothesise that helping the brain recover with nutrients may reduce vulnerability to further damage by the strep antibodies. This is a commonsense approach to a medical problem with no proven medical solutions as yet. The case studies that we have gathered to-date at the clinic are encouraging. Results of this approach show significant changes towards normal in QEEG brainmapping and improvement in behaviours. Jacques Duff presented this data at the International Society for Neuronal Regulation Scientific Seminar in Sydney (Sept. 2004) (Jacques Duff and Dr. Joe Nastasi)

Is there a test for PANDAS?

No. The diagnosis of PANDAS is a clinical diagnosis, which means that there are no lab tests that can diagnose PANDAS. Instead clinicians use 5 diagnostic criteria for the diagnosis of PANDAS (see below). At the present time the clinical features of the illness are the only means of determining whether or not a child might have PANDAS.

What are the diagnostic criteria for PANDAS?

Pandas is diagnosed if there is an episodic history of the following symptoms associated with strep infections. Children with PANDAS seem to have dramatic ups and downs in their OCD and/or tic severity. Tics or OCD which are almost always present at a relatively consistent level do not represent an episodic course. Many children with OCD or tics have good days and bad days, or even good weeks and bad weeks. However, patients with PANDAS have a very sudden onset or worsening of their symptoms, followed by a slow, gradual improvement. If they get another strep. infection, their symptoms suddenly worsen again. The increased symptom severity usually persists for at least several weeks, but may last for several months or longer. The tics or OCD then seem to gradually fade away, and the children often enjoy a few weeks or several months without problems. When they have another strep. throat infection the tics or OCD or associated behaviours return just as suddenly and dramatically as they did previously.

My child has had strep. throat before, and he has tics and/or OCD. Does that mean he has PANDAS?

No. Many children have OCD and/or tics, and almost all school aged children get strep. throat at some point in their lives. Only when a child has a very episodic course of tics and/or OCD and seems to have strep. throat shortly before or at the time of a dramatic worsening of symptoms does this indicate the possibility of PANDAS.

What does an elevated anti-streptococcal antibody titer mean? Is this bad for my child?

An elevated anti-strep. titer (such as an ASOT or an AntiDNAse-B) means the child has had a strep. infection sometime within the past few months, and his body created antibodies to fight the streptococcus bacteria. This is not bad. In fact it is a normal, healthy response-- all healthy people create antibodies to fight infections. The antibodies stay in the body for some time after the infection is gone, but the amount of time that the antibodies persist varies greatly between different individuals. Some children have "positive" antibody titers for many months after a single infection. This means that an elevated anti-streptococcal titer may have nothing to do with the present worsening symptoms, but instead indicates a long-since healed strep. throat.

Could an adult or teenager have PANDAS?

By definition, PANDAS is a paediatric disorder. It is possible that adolescents and adults may have immune mediated OCD. Although the research studies at the NIMH are restricted to PANDAS, there are a number of reported cases in the medical literature of adolescent and adult onset OCD and TICS with GABHS and even non-Haemolitic streptococcus infections.

Will Penicillin treat PANDAS?

No. Penicillin and other antibiotics kill streptococcus and other types of bactera. The antibiotics treat the sore throat or pharyngitis caused by the strep., by getting rid of the bacteria. However, in PANDAS, it appears that antibodies produced by the body in response to the strep. infection are the cause of the problem, not the bacteria themselves. Therefore one could not expect antibiotics such as penicillin to treat the symptoms of PANDAS.

Current research at the NIMH has been investigating the use of antibiotics as a form of prophylaxis or prevention of future problems. It is important to note however, that the success of antibiotic prophylaxis for PANDAS patients has not yet been proven. Until its usefulness is determined, penicillin and other antibiotics should NOT be used as long-term treatment for OCD and tics.