Recently I submitted an article on Adult PANDAS to a major psychiatric journal. I hope that it will be published. It will be the first article on the topic of Adult PANDAS. in preparation for this admission, I reviewed all of the available medical/psychiatric literature on PANDAS (and am quite grateful to the hospital librarian who actually did the search and retrieval for me). Additionally, I visited some PANDAS network websites and chatterings. What I saw was frustrating, sad and in some ways irritating. That is why I write this post.
As a result of my own research, website and blogs I have become somewhat well known to patients and families afflicted with PANDAS. I received e-mails from around the world from those seeking advice, referrals and treatment. It is frustrating and sad to see the suffering that patients and families experience as a result of the obdurate refusal of mainstream corporate medicine, insurance industry and the NIH to acknowledge and address an obvious and significant problem which, as illustrated in my paper, is a much broader and deeper problem than initially thought.
Before I continue let me make it perfectly clear that I have no best interest in being the most “right” physician researcher. My goal is to make the best contribution I can. It was problematic to see other researchers criticize one another, assert predominance of their position over others and imply that others are simply wrong. Furthermore it is troublesome when parents hold out hope for a single definitive test to diagnose PANDAS in every case and expect a cure imminently. Indeed I am an advocate for early tonsillectomy. Others cite their experience and discourage it.
Devoted researchers are looking for a post streptococcal infection marker that would indicate an autoimmune attack on the basal ganglia. Hopefully that can be found, yet will not be identified as the definitive test for PANDAS. The test would exclude the effects of innumerable other infectious agents and the autoimmune attack on parts of the brain other than the basal ganglia.
Medicine cures very little. It treats, corrects, controls, suppresses, and whenever possible prevents illness. The concept of cure implies that recurrence is impossible. Dr. Jonas Salk “cured” polio by the development of a vaccine that prevented polio. at the present level of understanding, patients diagnosed with PANDAS and successfully treated will still be prone to flares upon re-exposure to the precipitating agent. Flares can be addressed and possibly prevented.
Infectious agents other than group A streptococcus cause PANDAS. It has been associated with Mycoplasma, Lyme disease, Staphylococcus, Haemophilus influenza, pneumococcus, H1 N1, and certainly other viruses and infectious agents yet to be identified. Attack on the basal ganglia can cause tics, Tourette’s, choreiform movement disorders amongst others. But what of OCD, anxiety and panic, anorexia nervosa, exacerbation or precipitation of ADHD? OCD involves the prefrontal cortex and temporal lobe. Anxiety and panic involve the entire limbic system, the autonomic nervous system, frontal and temporal lobe and probably hypothalamic/pituitary foci. ADHD involves the frontal lobes, temporal lobes, hypothalamus and pituitary-- and to a variable degree the basal ganglia. The implication of this is clear: PANDAS is a spectrum disorder as is ADHD and many other things. Multiple genetic loci have been identified in ADHD and variable expression and penetrance determines its presentation in a given individual. This is certain to be the case in PANDAS.
A similar example holds true in the disorder narcolepsy. Specific HLA antigens have been identified to be positive in greater than 99% of Caucasians with this disorder. There is a lower rate in other racial groups. Yet, at least 30% of my Caucasian patient’s with narcolepsy are negative for the HLA antigen. Clinically, they have narcolepsy, which has been substantiated by polysomnography and multiple sleep latency tests. The blood test is negative.
My evidence-based clinical research Has found that the anti-DNAase B antibody is an important marker that is sufficient but not necessary for the diagnosis of PANDAS in the right clinical circumstances. The same holds true for streptozyme, mycoplasma and Lyme titers and various other measurements. The ASO titer isn’t particularly helpful. Yet all of these may be sufficient in the right clinical circumstance but none are necessary.
Similarly, in my practice, dramatically positive results have been obtained by removal of tonsils and adenoids. This begs the question of the dramatic increase in patients with disorders now believed to be related to PANDAS in the post-tonsillectomy era. It also begs the question of what to do about carrier states in families and school. Until approximately 1970, almost all Americans were born to parents who had undergone tonsillectomy as children, and underwent tonsillectomy themselves as small children, as did the siblings, classmates, and neighbors. Someone with tonsils in his or her teens was a novelty.
For example, in my practice, we deal with flares by education, early identification, early intervention with antibiotics and or corticosteroids as the clinical situation warrants and have a realistic expectation of the future. Given that the port of entry for infectious agents in the vast majority of patients is through the upper airways I am discussing a trial of prophylactic inhaled nasal and pulmonary steroids, the same as I used for asthma and allergies, to determine if we can prevent or attenuate flares. Don’t know yet.
So, to patients, parents, and physicians I say the following: Keep an open, rational mind. Look at all of the information. Be pragmatic and realistic. look at the short term and long-term risks and benefits of chronic antibiotic use, plasmapheresis, IV Ig and tonsillectomy. [For those who are preoccupied with the notion that some patients with PANDAS get worse after tonsillectomy be aware that the procedure itself releases an enormous surge of bugs into the bloodstream and an acute flare is possible. I am not aware if tonsils can be removed with lasers or by cryosurgery. Flares in these circumstances subsides quickly. The exceptional cases lie with autistic children. PANDAS affects them horribly. And the surge of infectious agents during surgery may add to that for an uncertain period of time.]
For those who read this who have no one to turn to in their neighborhood or community who has a clue about the diagnosis and treatment of PANDAS I encourage you to collate the data yourself and literally show them in the face of physicians who haven’t heard, don’t understand, and worst of all don’t believe it. Within a day or two I hope to have the available bibliography on PANDAS--titles and abstracts--posted on my website, BeverlyHillsShrink.blogspot.com. Good luck out there.