Pots, Pans, and PANDAS: Insidious, Ignored, Destructive, Yet Treatable

PANDAS is more common than most people think, particularly academic researchers who want to constrain science and control discoveries and credits. PANDAS occurs in adults, frequently.

First, let us do away with the acronym. It started out as PANDAS. Then came PANS and POTS and various other acronyms, kitchen-related or otherwise. The most prudent way to address this is to be specific with the acronym. PANDAS stands for Post-infectious Auto-immune Neurologic and Psychiatric Disorders. For the sake of discussion, I shall refer to it as PANDAS in this post. The post-infectious part is quite important; there are many problems that may seem to be PANDAS that are not, or not entirely. There are active infections that attack the nervous system (or the body in general), chronic or subacute infections attacking the nervous system, post-infectious neurologic degeneration of the nervous system, and direct post-infectious damage to the nervous system. And then there is any combination of the above. This might seem like a lot to take in but unless one considers all viable options and combinations one will misdiagnose and potentially mismanage the problems.

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The autoimmune problem is the core issue. Since we are exploring post infectious processes we need to realize that any kind of infectious agent can attack the brain. It is not like a concussion, stroke, or tumor. The infectious agent can be as simple as a bacterium. It can be something arcane and difficult, such as Lyme disease. It can be any number of viruses that can cause encephalitis. It can be mycoplasma, and who knows what else.

Hence, it is incumbent upon the physician to contemplate all of these options. When the diagnosis is suspected and there may be some laboratory evidence of an auto-immune problem it needs to be considered that there could be a concurrent active infection or subacute infection involved. Lyme disease is an excellent example; an active infection and a post-infectious problem together. Both the infection and the autoimmune disorder must be treated simultaneously.

There are some curious circumstances where it may be infectious or metabolic. PANDAS may be caused by abnormal flora in the gut. When there are abnormal bacteria in the bowels, the body triggers an immune response, attempting to eradicate the interlopers and restore homeostasis in the gut. In some people, the antibodies sent to clear up the problem actually attack the nervous system. There are also situations of leaky gut syndrome, often associated with Crohn’s disease, irritable bowel disease, certain gastric bypass procedures, wherein chemicals usually not able to pass through the intestinal wall into the circulation do get through and cause what is basically an encephalopathy. Those seem to be more a direct chemical irritation rather than an autoimmune one. Yet the bacteria in these people can cause leaky gut as well as PANDAS, so it is never simple.

PANDAS occurs across the lifespan. It can occur in very small children up to seniors. It can have a dramatic, acute presentation after some form of infection. It may have a dramatic onset after no apparent infection or one we would consider sub-clinical. For reasons that are not entirely clear, it may not emerge for some time after a history of something like strep throat. The start can be the abrupt onset of florid symptoms in someone who carried it for years or decades—perhaps a single facial tic or some mannerism. Such is the case of a woman in her mid-60s, with recent-onset PANDAS that was treated effectively with tonsillectomy and appropriate pharmacotherapy and immunotherapy.

The notion that PANDAS cannot occur after the age of 18 is a fallacy. It can and it does. It does not go away at 18 if you have it. Insurance companies don’t want to pay for tonsillectomies, IVIG, and a variety of other procedures if they can avoid it. The control freak researchers want to establish specific narrow guidelines for what they might call PANDAS thereby excluding many other cases. Then every couple of years they either broaden the diagnosis or add subcategories or new names for different symptoms.

A nidus of infection is important to locate whenever possible. If the source that triggers autoimmune response can be identified and eradicated then the autoimmune response will cease. That’s not a cure but it is an effective treatment. People susceptible to PANDAS all have some subtle auto-immune deficiency that makes them vulnerable to these auto-immune responses. Support of the immune system is an elemental part of the treatment. For example, if your tonsils contain micro- abscesses of bacteria that can’t be reached by your antibodies, the antibodies continue to be generated and sometimes go after your brain.

I was derided more than a decade ago, in writing and at a conference for recommending tonsillectomy in selected PANDAS patients. The results in my practice were and are phenomenal. An excellent paper presented in 2015 clearly demonstrated the efficacy of tonsillectomy for appropriate patients. Similarly, mucoceles, cysts, abscesses, appendices, and other areas that could provide a base for bacteria to flourish need to be found and eradicated whenever possible.

Can anyone get PANDAS? I don’t think so. I have a high degree of suspicion that there is a genetic predisposition to this immune deficiency disorder. There may be genetic evidence for it in the future. This may not be one simple gene issue. More likely a combination of genes with variable penetrance determines susceptibility. This would be akin to ADHD, where at least seven genetic loci have been identified. To look at it from this perspective illustrates why there are so many variable presentations of the ADHD spectrum.

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All bad things that happen are not PANDAS. I receive heartbreaking emails and queries from all over the world. Some of what I see that seems to be in the PANDAS spectrum is not. There are many inborn errors of metabolism, rare genetic disorders, chronic viral infections, and a host of other things that cause insults to the nervous system. They are not PANDAS. That does not mean that the individual might not have a concurrent infection and a potential for PANDAS.

PANDAS is not epidemic but it is more common than acknowledged. I have seen statements from some prominent researchers who indicate that it is as rare as hens' teeth. I beg to differ. In my hospital practice, I diagnose about one new case of PANDAS each month. That is only in the patients I see. If we were to look at the patients of the general population, imagine what we would find. Also, the patients at my hospital are all 18 years old and above. No children or adolescents. How can they have PANDAS?

This diagnosis and subsequent treatment are life-changing for people previously mislabeled with Bipolar, Tourette’s, OCD, Eating Disorders, ODD, and others. A pattern of symptoms incorrectly labeled as diagnoses that morph from one to another over time is a very strong marker for PANDAS.

A recent news story sent to me described a celebrity mother who shared her 19-year-old daughter’s struggle with “mental illness”: anxiety, panic, depression, anorexia, and OCD. This patient’s life was righted by the diagnosis and treatment of PANDAS. That news story suggested that the incidence of PANDAS in the pediatric psychiatric population is 10 percent. That could very well be.

Should the entire world be screened for PANDAS? No. Should physicians, parents, teachers, and others know when to think about it and when to look for it? Yes. For doctors, it could be helpful to think of it with any patient you see, to look for signs and follow them.

PANDAS is not always sudden onset. The patient with a longstanding problem may well have had PANDAS all along. It's just that no one thought of it.

The list of symptoms is large and evolving and includes: anxiety, panic, OCD, eating disorders, tics, Tourette’s, halitosis, strange body odor, worsening of depression, ADHD, and many others. Recent infectious illnesses or exposure to someone with an infectious illness is a factor. You do not need to feel sick to acquire and develop PANDAS.

I must leave a discussion of diagnostic procedures and treatment options for another post. My goal here is education, information, and empowerment. You might review my paper on Adult PANDAS written in 2012 and rejected by journals because there “is no such thing.”

Everything is not PANDAS. Rule it in or rule it out. Be well informed, but be realistic.

Note: I cannot give and medical advice, recommendations, or treatment on this forum.