Jory Goodman M.D.

Attention, Please

PANDAS Is for Everyone, Though It's Usually Missed

PANDAS remains poorly understood and woefully mismanaged.

Posted Jul 24, 2019

It has been quite sometime since last I posted on this blog. I apologize to the readers for the long delay. I have been busy with my research into PANDAS. Simultaneously, I have done a lot of work in the area of NeuroPsycho endocrinology. Some of that is posted on this blog.

What will follow will be a combination of my thoughts on the situation up-to-date; answers to many of the questions I have received over the years and some suggestions for future work. To foreshadow two points: 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 acrimonious acronym. It started out as PANDAS. Then came PANS and POTS and various other things. The most prudent way to address this issue is to be specific: 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 for there are many problems that may seem to be PANDAS that are not, or not entirely. There are active infection’s attack on the nervous system (or the body in general), chronic and/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.

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 or a stroke or tumor. It can be obvious things such as a bacterium that is readily identified. It can be something arcane and difficult such as Lyme disease. It can be any number of viruses which can cause encephalitis acutely, subacutely or chronically. 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 of this; 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. I have seen this three times. Abnormal bacteria in the bowels trigger an immune response. The body attempts to eradicate the interlopers and restore homeostasis in the gut. In some people, the antibodies attack the nervous system. Correction of the colonic balance of normal bacteria solves the problem, often without immunotherapy and PANDAS symptoms abate. However there are also situations of leaky gut syndrome, often associated with Crohn’s disease, irritable bowel disease, certain gastric bypass procedures and the like wherein chemicals usually not able to pass through the intestinal wall into the circulation get through and cause what is basically an encephalopathy. Those seem to be more a direct chemical irritation rather than an autoimmune one and one needs to think of all of these options.  Yet, the bacteria in these people can cause leaky gut and PANDAS so it is never simple.

As we meander on here let me address some questions. PANDAS occurs across the lifespan. It can occur in very small children through the senium. It can have a dramatic acute presentation after some form of infection. It may have a dramatic onset after no apparent infection or what we would consider sub-clinical. For reasons that are not entirely clear it may not emerge for sometime after a history of something like a strep throat. At this time it’s hard to delineate delayed onset as opposed to acute onset from something that is subclinical or chronic. It can have an onset in adults and older adults. I treated 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 ludicrous and insults reason. It can and it does. It does not go away at 18 if you have it. These situations have more to do with insurance companies and researchers than anything else. Insurance companies don’t want to pay for tonsillectomies, IVIG and a variety of other things 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. In my profession it is common.

A nidus of infection is important to locate whenever possible. If the source of the 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 autoimmune deficiency which 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 microabscesses of bacteria that can’t be reached by your antibodies the antibodies continue to be generated and sometimes they 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 in a prominent ENT journal clearly demonstrated the efficacy of tonsillectomy for appropriate patients. Similarly, mucoceles, cysts, abscesses, appendices, for example, 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. I think there will be genetic evidence for it in the future. I don’t think it will be one simple gene issue. More likely a combination of genes, in different combinations determine 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. (N.B. There is a definite genetic overlap in patients with ADHD and PANDAS. Just FYI).

Is it possible that anyone with a weakened immune system can become susceptible? The answer is a solid maybe. Can someone with an absolutely normal immune system receive some sort of insult other than an infection which predisposes them to this problem? Again, maybe.

All the bad things that happen are not PANDAS. I receive heartbreaking emails and queries from all over the world. Some of what I see which 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. These situations require careful and sophisticated evaluation.

PANDAS is not an 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 that I see. If we were to look at the patient’s of other physicians at that hospital, and other hospitals and clinics, and doctors’ offices and the general population imagine what we would find. Did I mention that the patients at my hospital are all 18 years old and above? No children or adolescents. So how can they have PANDAS?

This diagnosis and subsequent treatment is life-changing for people previously mislabeled with; Bipolar, Tourette’s, OCD, Eating Disorders, ODD, and…you name it.  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 told of 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 article suggested that the incidence of PANDAS in the pediatric psychiatric population is 10 percent. Could very well be.

What are some of the things to look for to contemplate the diagnosis of PANDAS? Obviously for most of the population PANDAS is never considered. (Medical school aphorism:  If you don’t think of it you don’t look for it. If you don’t look for it you don’t find it). Really!

Should the entire world be screened for PANDAS? No. Should physicians, parents, teachers and many others know when to think about it and when to look for it? Yes.

Hint:  Think of it with any patient you see. Look for signs and follow them.

Be aware.  PANDAS is not always sudden onset. The patient with a long-standing problem may well have had PANDAS all along.  Just no one thought of it.

The list of symptoms is large and evolving. Anxiety, panic, OCD, eating disorders, tics, Tourette’s.  Worsening of any of the above as well as worsening of depression, ADHD and many others. Recent infectious illnesses or exposure to someone with an infectious illness. You do not need to feel sick to acquire and develop PANDAS. Terrible halitosis, strange body odor, myoclonus…In summary:  The lexicon of neurologic and psychiatric diagnoses may be caused or exacerbated by PANDAS.

If you have thought of PANDAS you might be right or wrong. There are cases where an expert knows it is or isn’t. There are not a lot of experts. Thus a reasonable investigation is warranted. If someone says that they do not believe in PANDAS leave their house of worship and go to a capable physician. If they say it does not exist in people 18 or older look at them as you would a simpleton and go to a capable physician.

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 article on Adult PANDAS, written in 2012 and rejected by journals because there “is no such thing”. Adult PANDAS: Bare Facts

Everything is not PANDAS. Rule it in or rule it out. Be well informed, but be realistic. Many self-proclaimed PANDAS experts are not—experts. PANDAS can be treated, not cured. Be prepared to pack up and travel to see someone who knows PANDAS and can give you your best shot. Good luck.

{Please be aware that I cannot respond to everyone's comments and questions and that I cannot give and medical advice, recommendations or treatment on this forum.}