PANDAS, PANS & Homeopathy

PART I

Jack was a pretty normal, happy 7 year old who came down with a cough and fever one winter's day.  He got over the acute physical symptoms after a few days but still didn't feel well.  Jack complained of being sad and lethargic, poor sleep, low appetite, not being able to concentrate, and no longer wanting to go to school.   His teachers also noticed that he seemed unusually withdrawn in the classroom.

This went on for about a month and then one day, while attending a sporting event with his family, he suddenly became acutely anxious and was overwhelmed by what he called 'bad thoughts'.   The thoughts, mostly of a perverse sexual nature, and the anxiety continued on, becoming a chronic problem. Jack subsequently developed compulsive behaviors such as counting, repetitive questions, and particular hand motions as well.   Eye blinking, which had first appeared a few months prior to getting sick but had resolved on its own, also reappeared as a tic like behavior.

His parents brought him to a pediatrician who diagnosed Jack as having "anxiety with obsessional features" and suggested counseling when blood tests came back negative.  

Jack's was a pretty typical presentation of a disorder known as PANS or PANDAS. These are acronyms for 'Pediatric Acute-onset Neuropsychiatric Syndrome' and 'Pediatric Autoimmune Neuropsychiatric Disorders Associated With Streptococcal Infections', respectively.  They are related syndromes in which a relatively normal, healthy child suddenly develops significant neurological, behavior and emotional symptoms.  

Unlike its 'cousin' autism, widespread awareness of PANS/PANDAS has not broken into the national consciousness. Estimates as to its prevalence vary widely: one source mentions 1 in 2000 children, another 1 in 200 children. But it is now common enough for there to be a growing literature, support groups, medical specialists and hospital units dedicated to its diagnosis and treatment.

'PANDAS' was the original term for this syndrome that was first recognized in 1998 by a team of medical investigators from the National Institute of Mental Health led by a pediatrician, Dr. Susan Swedo. They published "the first comprehensive report of a group of patients with childhood-onset obsessive-compulsive disorder (OCD) and tic disorders. The children have different primary diagnoses, including both OCD and tic disorders, but share in common a clinical course characterized by dramatic symptom exacerbations following group A β-hemolytic streptococcal (GABHS) infections."1

Fourteen years later, Swedo published another paper2 that introduced the term 'PANS' both because the Strep connection was controversial in the medical world, and, more importantly, because over the years it had become apparent that there were many children who developed the same group of symptoms without a history of and positive test for streptococcal infections.  PANDAS then became a subset of PANS. 

As a syndrome - meaning a collection of concurrent symptoms without a recognized cause, there is no definitive test for PANS.   Diagnosis relies on recognition of the following criteria outlined by Swedo3:  

"Abrupt, dramatic onset of obsessive-compulsive disorder or severely restricted food intake, and 

Concurrent presence of additional neuropsychiatric symptoms, with similarly severe and acute onset, from at least two of the following seven categories: 

1. Anxiety

2. Emotional lability and/or depression 

3. Irritability, aggression and/or severely oppositional behaviors 

4. Behavioral (developmental) regression 

5. Deterioration in school performance 

6. Sensory or motor abnormalities 

7. Somatic signs and symptoms, including sleep disturbances, enuresis or urinary frequency" 

 

Although the symptoms can evolve over time, the true hallmark of the disorder that distinguishes it from OCD, Tourettes or other similar neurological disorders is the suddenness of onset.  One can only imagine what it is like as a parent to witness your relatively normal, healthy child begin to display major neurological abnormalities and emotional changes absolutely out of the blue.

Compounding the challenges faced by PANS families is that the syndrome is often misdiagnosed, and, even if it is recognized, conventional treatment options are limited.   With the thought of eliminating the strep or other infectious agent, antibiotics are commonly prescribed, oftentimes for extended periods of time. In addition, psychiatric medication is sometimes used to suppress anxiety and other outward behavioral displays.

The issue is that antibiotics do not address non-bacterial causes of the syndrome and, moreover, if effective at all, they most are often only temporarily so.  Each fresh exposure to whatever bug that might be going around will cause a relapse of symptoms and more antibiotics.  And, it is not unusual that the each subsequent round of medication will be less effective.  Just as consequential are the long-term repercussions on the immune and the digestive systems from these heavy, repeated doses.  

Likewise, the psychiatric drugs are not curative but only a band-aid over the most disturbing behaviors of a PANS child. They too can have serious, short and long-term side effects.

What this approach fails to take into account is the disposition of the child to be susceptible to PANS/PANDAS.  Each human being has his or her own unique makeup, what in homeopathy is known as the constitution.  It is an integrated sum of inheritance, prenatal influences as well as earlier life experiences and exposures that make up who we are physically, mentally and emotionally.

It is not an accident that this syndrome has appeared in the last 20 years.  The degradation in the environment and our food sources coupled with poor dietary habits, increasing exposure to electro-magnetic pollution and aggressive vaccination schedules all play a part in placing a substantial toxic burden on our children.   The dramatic rise in pediatric asthma, cancer, obesity and autism - to name just a few conditions - is a consequence of this new world they now inhabit.

The PANS/PANDAS child does not 'catch' a disease, per se.  He or she is uniquely vulnerable to these influences and displays a unique response to them.  Even amongst this population, if one looks at the specific history, temperament and symptoms of each child there is great individuality.

The efficacy of homeopathic treatment primarily lies in taking into account this individuality as a means of addressing the susceptibility of the child.   Once that is successfully attended to, the symptoms will begin to fall away.  This is the case whether a child is suffering from PANS/PANDAS, asthma, a simple earache or any number of acute and chronic illnesses.

In the case of Jack, 5 weeks after taking the homeopathic medicine that I had chosen for him, his mother reported a huge improvement.  His tics and crying had reduced dramatically.  The bad thoughts and OCD behaviors were also less.   He was by no means asymptomatic, but there had been a remarkable change.

With continued treatment, Jack improved further.  Within 3 or 4 months he was back to being his 'old silly self' at school and his life - as well as his family's - more or less returned to normal.   Over time, most of his symptoms have receded.

This is not to say that along the way his progress has always been straightforward.  Along the way there have been times of regression that have necessitated a repetition of or a change in his homeopathic prescription.  Overall, Jack has responded well to these adjustments.  Today, several years later, although traces of his sensitivity remain, he is a relatively well-adjusted budding adolescent.   

1. "Pediatric Autoimmune Neuropsychiatric Disorders Associated With Streptococcal Infections: Clinical Description of the First 50 Cases", by Susan E. Swedo, M.D., et al.

2. "From Research Subgroup to Clinical Syndrome: Modifying the PANDAS Criteria to Describe PANS (Pediatric Acute-onset Neuropsychiatric Syndrome", by Susan E. Swedo, M.D., et al 

3. Ibid

PART II

Angela was a bubbly, sensitive and anxious 8 year old whose parents first sought out homeopathic treatment for her about a year ago.  A half year earlier, she suddenly developed a throat clearing tic one evening while attending children's theatre program.  Over the next month, other tics like eye blinking, mouth movements, high pitched screams and various arm movements appeared.  

These were followed by a disturbing loss of impulse control and hypersensitivity to external stimuli.   She began to blurt out, "Fire!... Just kidding", or "I hate you Mom!... Just kidding" or any number of peculiar things followed by some form of apology or regret.   Loud noises and crowds made her anxious, clothing didn't feel right.   It was easy for her to become angry and there were a few episodes of inconsolable rage. Her mother described Angela's how eyes would glass over and she would emit a scream 'from the depth of her being'.  

Normal interactions with others became increasingly difficult.  Any comment from her parents would be interpreted as a criticism.   She felt that her friends were all being mean to her and had no capacity whatsoever to deal with normal encounters with other children.   Her anxiety about being alone and going out increased to the extent that she stopped going to school.  

Initially, blood work and strep swabs were negative but when Angela developed what appeared to be a yeast infection with itchy discharge, multiple cultures all indicated a 'heavy incidence of Group A strep'.  Her symptoms, history and tests left little doubt that she was suffering from PANS/PANDAS.

Over the course of the next year, Angela was put on a series of antibiotics although her parents rejected the suggestion of antidepressants.  She also began supplementation recommended by a chiropractor and her parents instituted a rigorous diet that eliminated dairy, sugar and preservatives. 

Angela did show signs of improvement, but often it was only temporary.  She was prone to flare-ups and complete relapses as well.   At the time of our initial appointment, she still was exhibiting tics, impulsive behavior, and physical as well as emotional hypersensitivity.  Angela was also still on the antibiotics.  Her parents were worried about the effects of stopping them - but equally concerned about the long-term consequences of antibiotic treatment.  

Due to the continued antibiotic use, Angela was prescribed a homeopathic remedy on a daily basis.  Overall, she has shown great improvement over the year of treatment.   At the last follow-up appointment, her mother described how Angela was really 'acting like her old self' and that the 'wildness in her eyes' was gone.  

This progress has not been without setbacks - very typical in PANS/PANDAS cases - when, for instance, she would catch a cold or veer off her diet.  And it has also taken time for the parents to develop confidence in the homeopathic treatment to the extent that they are ready to let go of antibiotic treatment.   

What is essential to understand about the homeopathic approach to PANS/PANDAS (as well as most other conditions) is that the treatment is based on what is unique or characteristic about the child and not on the common symptoms of the syndrome itself.    That is, the process of individualization largely depends on filtering out all the features used to diagnose the condition and focusing on the underlying nature of the person.

To that end, it is illustrative to compare the treatment in Angela's case with Jack's.  Despite suffering from the same condition, they were given quite different remedies in different potencies with differing intervals of repetition.

Angela was prescribed 'Carcinosin', which, as the name implies, is a remedy derived from cancer tissue.   It is what in homeopathy is termed a 'nosode', meaning a remedy made from disease tissues.   Since the end product is arrived at by ' potentizing' (a homeopathic pharmacological process of extreme dilution), the actual physical molecules of the substance itself are filtered out leaving only the energetic imprint or information. 

Nosodes of various sorts are quite commonly prescribed in homeopathy.  Perhaps as a reflection of the times, Carcinosin in particular is a remedy that comes up very frequently in my practice. 

The temperament of a Carcinosin person is quite perfectionistic and sensitive. They tend to be quite responsible, sometimes overly so, and easily become anxious if they have not performed up to their very high standards.  Criticism of even the mildest form is very difficult for them to bear as it is interpreted as an indication of some unacceptable personal shortcoming.   

Carcinosin personalities are also sensitive to the feelings of others, being empathetic to others persons and often extraordinarily so toward animals. They typically have a strong interest in creative pursuits such as art, music and dance.

All of the above described Angela almost to a tee.  It is in a sense who she is: the way she was before exhibiting signs of PANS/PANDAS and, although somewhat distorted by the effects of the syndrome, the way she is since her diagnosis.

The remedy prescribed for Jack was also a nosode, but derived from another source.  While Carcinosin is of more recent vintage, Medorrhinum, potentized from gonorrheal discharge, has a long history in homeopathy.   It is related to one of the main 'miasms' (see Inherited Tendencies ) or genetic dispositions recognized by homeopaths for the last two centuries.

In contrast to the perfectionism of Carcinosin, Medorrhinum feels inherently flawed and seeks to hide it from the rest of the world.   This leads to, on the one hand, an underlying anxiety that they will be discovered or exposed and, on the other a sense of guilt.   Typically, the anxiety manifests as an ongoing foreboding that something bad is about to happen and the guilt manifests as a feeling that they have done something wrong.  

With his 'catastrophizing' about bad things occurring and feelings of guilt about sexual thoughts, Jack fit the Medorrhinum picture well.   This was in addition to his fear of the dark, strong connection to animals (like Carcinosin) and compulsive behavior - all of which are also aspects of Medorrhinum present in Jack.

Although both of these cases responded well to nosodes, it is certainly not the case that they are prescribed for every child or even most children with PANS/PANDAS. Any remedy has the potential to be curative as long as it fits the characteristic symptoms and nature of the child.

If there is a significant common thread between the cases of these two children, it is their sensitive natures.  Both displayed a tendency toward anxiety before becoming fully symptomatic and, not insignificantly, parents of both also had histories of anxiety.  

From these and other cases of PANS/PANDAS, one can infer that the syndrome is more likely to manifest in children with high-strung nervous systems and who are more reactive to external stimuli.  This is not the cause of the syndrome per se, it just speaks to why some children are more vulnerable to developing it than others. 

It was once thought that PANDAS was exclusively caused by strep infections attacking the basal ganglia of the brain.  As it turns out, there are numerous other infectious and environmental factors associated with the condition.  While it is always tempting to look for a single cause, the likelihood is that the accumulation of toxic exposures common to modern day life - be they from pathogens, food, air, screens, drugs or vaccines- results in a certain subset of children with unique susceptibilities manifesting a set of neurological symptoms that are now identifiable as a specific syndrome.

Implementing strategies to lower the toxic burden is, of course, an essential aspect of treating children with PANS/PANDAS.  But the ultimate benefit of long-term therapies that are toxic in and of themselves is at best questionable. 

Homeopathy, on the other hand, brings a different perspective to bear on helping these children. It has a unique capacity to address their susceptibility and, as a consequence, reducing their reactivity, allowing them to return to more normal, healthier ways of being in the world.