A reality of trauma and many other mental health symptoms is the complexity of causes. This means that sustainable solutions have to be complex as well. Single-cause approaches don’t work for very long.
Professionals—counselors, psychologists, medical doctors, nutritionists, and therapists of all kinds—are schooled in a particular field of diagnosis and treatment. They trust the tools they know, often had teachers and mentors who did wonderful things with them, and see these tools as the answer to problems they encounter.
In other words, they tend to define the symptoms they see as problems caused by the issues they are trained to deal with. As the saying goes: “If the only tool you have is a hammer, everything you see is a nail.”
All this is natural and perhaps not so bad, if not for something else. Science is increasingly revealing that a large number of medical and mental problems are interrelated. In ways unknown to the teachers who mentored the practitioners of today, diet and exercise, community, environment, and mind are inextricably woven together. Problems in one area often manifest in other areas.
Few professionals are equipped to diagnose and treat people in the integrative way required. A large number of people receive care that is less effective and less sustainable than if the practitioners working with them were up-to-date about cross-linkages among disciplines.
I was first introduced to the brain-gut connection over a decade ago. At that time, few doctors or other practitioners were aware of this connection. In recent years, social media and numerous evidence-based studies have made it far easier to learn about the many implications of this interaction.
In my last post, I wrote about inflammation, one of the best-researched and most promising areas for integrative approaches to mental health. In this post, I go a step further and explore a question with implications for almost all aspects of mental health: What are the root causes of inflammation?
Stress, the Gut and Inflammation
Inflammation is a protective mechanism that, once triggered, tries to isolate invaders in the body to prevent injury from spreading and to bring extra resources to locations the body selects as in need of special support. When exposed to events, organisms, or substances that trigger inflammation, the body produces small protein cells called cytokines. These cells promote inflammation in the body in response to a threat. Depending on the trigger, inflammation may be limited to one location, or it may be systematic.
An area where research has most clearly established inflammation as a body response that links mental health to physical illness is autoimmune disorders. You can find many essays on the web by searching on “emotional stress and autoimmune disorders.”
For example, a recent study by Song et al., (2018) analyzed more than 100,000 people who were diagnosed with stress-related symptoms. The researchers studied how many of these people developed an autoimmune disease a year or more later. They compared this to the incidence of autoimmune disorders in their siblings and in a pool of a million people who had no diagnosis of stress symptoms. They found that, after a year, people who had a diagnosis of stress-related symptoms were significantly more likely to develop an autoimmune condition than those who did not.
Stress, the Gut, and Autoimmunity
Much has been learned in recent years about the gut and the central role it plays in human functioning of many kinds. Until recently we thought the gut was simply a system for breaking down food and converting it into energy and waste. How little we knew!
The gut is now recognized as home to a vast microbiome of bacteria, viruses, pathogens, and fungi that interact with the brain in complex ways. When these organisms get out of balance with each other—something that can happen as a result of food or chemical intakes, changes in body chemistry, and many other factors that may favor one kind of organism over others—complex results can follow.
One is damage to the lining of the gut, often called “leaky gut.” In a weakened condition, the intestinal walls of the gut no longer provide an impermeable barrier between the teaming microbiome within and the rest of the body. Toxins and bacteria may penetrate intestinal walls and enter the bloodstream.
This triggers a reaction of the immune system, including inflammation. Through the “leaky gut,” inflammation can cross the blood-brain barrier (BBB) to the brain, and this is when many mental health symptoms emerge. To make things worse, sometimes inflammation triggers an overreaction in the body’s immune response, and the body mistakenly begins attacking itself in a misdirected autoimmune response. Such a response can sometimes become a full-blown autoimmune disease.
After a misdirected autoimmune response has been triggered once, inflammation will be triggered in the future in response to even small amounts of whatever first triggered that response. Viruses, infections, environmental toxins, stress, and trauma can trigger a renewed inflammatory response at any time. The byproducts of such responses cross the blood-brain barrier and trigger mental health symptoms.
There are many variables that trigger inflammation and initiate mental and physical symptoms. Usually, it is not just one, but a mix of several variables, such as:
- Short- and long-term exposure to stress
- A diet that is high in sugar, processed starches or other carbs, and/or processed fats (from process oils or fried foods)
- Viral or bacterial infections, pathogens, etc.
- Environmental toxins
- Malnutrition (a diet low in micro and macronutrients)
Underlying Infections as Root Causes
It is now widely known that it is important to maintain routines, sleep, and diet to promote and maintain good emotional health. Less commonly recognized is the role of underlying infections and pathogens as root causes that manifest in mental health symptoms. The body responds to these invaders with inflammation, and the inflammation can penetrate the blood-brain barrier described above.
The result can be mental health symptoms that are often misdiagnosed as ODD, ASD, ADHD, depression, bipolar, OCD, sensory processing disorder, anorexia and restrictive eating, tic disorders, schizophrenia, etc.
A Set of Complex, Debilitating Symptoms
The people that come to see me usually have been in therapy for many years. Often, they suffer from complex symptoms. They have been to more than one therapist and have been treated for more than one diagnosis. They have not able to reduce their symptoms and regain a sense of wellness. They struggle to retain hope of ever reaching sustainability.
In spite of their past experiences, almost all of my clients achieve improvement in their symptoms. The key, I am convinced, is an all-wellness approach (see my post) that targets the emotional, cognitive, physical, and spiritual aspects of a client’s life.
In addition to therapy, often focused on trauma since that’s my specialty, at the onset of work with clients I help them review their routines of diet and nutrition, movement and exercise, and sleep. Improvements in these areas bring improvement in emotional symptoms for such a large majority of my clients that I now include attention to them as a standard part of treatment.
As an integrative therapist, I sometimes think of my role as being a private investigator. I study each client’s personal history thoroughly. I find valuable information in medical reports, psychological evaluations, teacher evaluations, childhood pictures, old art making, and anything that can help me fill in more pieces of the puzzle of their debilitating symptoms.
I also often play a role as a “case manager” and maintain close contact with other professionals involved with my clients, such as medical doctors (when I am making a referral to a doctor I refer to an integrative MD), occupational therapists, speech therapists, physical therapists, neurotherapists, neuropsychologists, psychologists who conduct evaluations, private coaches, sports coaches, teachers, etc.
Over the years, I have come to learn that most of my clients who are survivors of developmental trauma are also suffering from some sort of inflammation and or autoimmune conditions.
An influential experience for me was working with a child with severe developmental trauma, manifested in some of the most difficult behavioral symptoms I have seen. The client came one day with what seemed like a minor cold with behavioral symptoms even more difficult than before.
As usual, I was also working closely with the parents and maintaining a joint journal with them. So, I knew that the only variable that had changed for the child was acquiring this cold.
A rapid test revealed a strep infection. This is a huge red flag, as strep is a predecessor for a neuroimmune syndrome that some refer to as autoimmune encephalitis (hereafter, AE, also known as PANDAS or PANS; see below for more info).
I referred the family to an integrative medical doctor who did more testing and administered antibiotics. Within days the symptoms were reduced to a level well below what they had ever been during my work with this client, who made steady progress during the months of that followed.
Childhood Adversity and Later Life Inflammation
Early adversity and exposure to stress at a young age were found to be linked with the development of inflammatory conditions later in life. Several authors have suggested that trauma can lead to medical illnesses (Callaghan et al., 2019; Flory and Yehuda, 2018; Hemmings et al., 2017; Renna et al., 2018;).
Autoimmune Encephalitis — One Example of the Interaction of Body and Mind
An example of the interaction of emotional and physical systems is Autoimmune Encephalitis (AE), an umbrella diagnosis for a spectrum of symptoms thought to be caused by neuroinflammation (inflammation of the brain). This inflammation appears when the immune system of the body overreacts to infection from bacteria or virus and mistakenly targets cells of the body rather than the invader.
I learned about AE when I grew puzzled with lack of progress in a few clients I was seeing with unusual emotional dysregulation issues. Extensive conversation with the parents and the basic orientation to integrative frameworks I already had led me to AE as a potential diagnosis. I continue to read and profit a great deal from the ongoing research and resulting exchanges, and I’ll focus on this syndrome for the remainder of this blog as a sort of case study in the kind of awareness and treatment approaches which I believe mental health practitioners must begin to adopt.
For readers who appreciate formal definitions, here’s one: AE (referred to as PANS/PANDAS OGK) “criteria define a broad spectrum of neuropsychiatric conditions, the syndrome is presumed to result from a variety of disease mechanisms and to have multiple etiologies, ranging from psychological trauma or underlying neurological, endocrine, and metabolic disorders to post-infectious autoimmune and neuroinflammatory disorders, such as pediatric autoimmune neuropsychiatric disorder associated with streptococcal infections (PANDAS), cerebral vasculitis, neuropsychiatric lupus, and others” (Swedo et al., 2017).
In simpler language, it seems that following an infection, the body sometimes mistakenly directs an immune response to attack healthy tissue in the brain resulting in inflammation in the Basal Ganglia area of the brain (Moleculera Labs). This area is responsible for motor control, executive functions and behaviors, and emotions. The resulting symptoms of AE are most commonly tics, OCD, behavioral and emotional dysregulation, and sensory integration, including restricted eating. There can also be other mental, emotional, cognitive, or physical symptoms.
Symptoms often occur suddenly, literally overnight in many cases, but are not correctly diagnosed since they can be easily attributed to other causes, and many pediatricians have no awareness of the syndrome. I have read hundreds of reports from families with kids that were diagnosed only years after the onset of symptoms took place.
AE is also known in some circles as PANS/PANDAS. Although recognized, studied, and treated at esteemed institutions like NIH and Stanford, it is still not a mainstream diagnosis. There is considerable evidence that a percentage of children who get sick with infections, including strep, experience brain inflammation that triggers serious ongoing mental, cognitive, and physical symptoms. However, contention exists regarding the nature, duration, and implications of such inflammation. For a fascinating and disturbing presentation of that contention, told from the perspective of those who believe in the existence of a complex, long-lasting syndrome (named AE, PANS or PANDAs), see these videos.
Though I’m not an MD, years of reading the research, extensive reading of anecdotal reports on social media from thousands of parents, and in-depth experience with a number of clients as a mental health practitioner, working in close consultation with medical and integrative medical professionals, leaves me fully convinced that indeed a larger syndrome is often triggered with longstanding consequences when brain inflammation occurs in children.
It will take time to sort out those issues. But unfortunately, in the meantime a large number of medical doctors, pediatricians, psychiatrists, neurologists, and general practitioners, not to mention therapists, teachers, school nurses, and parents, have no awareness of what is already known and widely agreed upon among researchers: Certain kinds of infection cause inflammation of the brain with potentially drastic impacts on mental health. The result is a percentage of children and teens who are needlessly told that something is wrong with them or are labeled as “troublemakers,” “hyper,” “bad,” “not smart,” “challenging,” “unfit,” etc. Many are treated only with psychiatric medications or by mental health therapists who are not informed about AE. Needless to say, these children do not get better, since the treatment fails to target the root causes of the neuroinflammation and underlying infections.
My Kid is Not Crazy is the name of a documentary film created by Tim Sorel. This video follows six children and their families as they face the debilitating impact of AE (PANS/PANDAS). This film also highlights the pioneering work of Susan Swedo, a researcher in the field of pediatrics and neuropsychiatry and, from 1998 till her retirement in 2019, Chief of the Pediatrics & Developmental Neuroscience Branch at the U.S. National Institute of Mental Health. Over three decades ago, Dr. Swedo unintentionally learned that an undiagnosed strep infection was the cause of one child’s mental health symptoms. For her, this was the beginning of a lifelong effort studying the connection of strep to many symptoms often labeled as mental illness.
In a recent conference, Swedo presented the history of PANS (AE) and described it as an infection that is causing a temporary loss of tolerance in the immune system. The immune system does not differentiate properly between the body and foreign invaders.
A typical experience with the syndrome is that a child gets sick (most commonly from strep, but possibly from other bacterial and viral infections OGK) and soon thereafter begins to manifest symptoms such as: tics, anxiety, suicide ideation, bipolar tendencies, hallucinations and delusions, self-harm urges, restrictive eating, OCD, bedwetting, cognitive decline, emotional regression, and many more. Most parents and clinicians do not link the symptoms to the recent infection.
In this presentation, Swedo suggests that the earlier the syndrome is recognized and treated, the less likely it is to become chronic. If onset symptoms are not treated right away, she says, “and central neuro-inflammation begins, we are left with a chronic symptomatology of PANDAS” (AE).
AE is more common than you think: About 1 in 200 kids in the U.S. alone may have a misdirected immune response to an infection that manifests in any one of these symptoms.
The hard part, of course, is knowing when the symptoms reflect AE, and when they reflect a straightforward case of one or something else. In my experience, the presence of several of these factors suggests weighing AE as a factor.
- A child has been a “difficult” child and does not “respond” to therapy.
- A child used to be well and, at some point, deteriorated (especially if the deterioration was very sudden).
- A child suddenly develops symptoms (a tic, OCD, restrictive eating, depression, suicide ideation, anxiety (especially separation anxiety), marked academic decline (change in focus, handwriting, math skills), bedwetting, hallucinations and delusions, and so forth).
- If your child displays a significant and sudden academic decline (change in focus, handwriting, math skills) that is not due to a recent injury.
When these circumstances are present, before you choose any course of treatment—seek out advice from a practitioner with experience in diagnosing and treating AE. The idea is that you need to rule out any possible medical reason before you choose to treat your kids or yourself with any other course of treatment.
Steps to consider if the above flags your attention:
1. Check if the child is suffering from an underlying infection that can affect him or her. Sometimes what looks like a common cold could indicate a persistent, long-term infection. Sometimes a family member can be a carrier without showing any symptoms. Check all family members.
2. If a child has been suffering for a long time from mental health symptoms, even if there’s an explanation for it (like past trauma), if the child does not respond to treatment, consider gut imbalance as a factor obstructing improvement. Healing the gut is very possibly essential for any sort of sustainable progress on the mental health symptoms. You may need to find a specialist to rule out the possibility of underlining infections or inflammation causing this.
3. Pay careful attention to diet (lack of micronutrients is a common problem), sleep, exercise and play, and social engagement. Deficits in any of these have an impact on overall well-being and increase vulnerability to gut imbalances, which in turn increases the likelihood of inflammation that may manifest in emotional disturbances. Develop an individualized sustainability plan to address the unique circumstances of the child.
4. In most cases, mental and physical symptoms impose a staggering toll on family members, who often live for years with children who are extremely volatile. Even a small cold can trigger a full-fledged flare of the syndrome and the return of distressing symptoms that affect the lives and routines of an entire family. The toll of caregiver stress can lead to burnout and PTSD. It is impossible to sustain such a strain for long without a plan to counteract it. Consider helping parents and family members who are living with or caring for a child with AE to develop their own self-sustainability plan.
5. Become informed. See more resources in references the below.
Whatever you choose to do, listen to what feels right for you and your family, find practitioners and medical doctors that you trust, do not hesitate to ask questions, consider and reconsider treatment plans, stay informed and keep reading, don't accept what anyone says as something that is set in stone.
© Dr. Odelya Gertel Kraybill Expressive Trauma Integration™
Some educational resources:
Treatment should be individualized. Even children from the same family have treatment tailored to each. (Swedo, et al., 2017).
What’s PANS/PANDAS blog.
“What You Should Know if You Ever Wondered if Your Child PANDAS or PANS (Even if your doctor ruled it out)”.
Longitude study: “Immune-Related Comorbidities in Childhood-Onset Obsessive Compulsive Disorder”.
The PANDAS Network
Braniste, V., Al-Asmakh, M., Kowal, C., Anuar, F., Abbaspour, A., Tóth, M., ... & Gulyás, B. (2014). The gut microbiota influences blood-brain barrier permeability in mice. Science translational medicine, 6(263), 263ra158-263ra158.
Callaghan, B. L., Fields, A., Gee, D. G., Gabard-Durnam, L., Caldera, C., Humphreys, K. L., ... & Tottenham, N. (2019). Mind and gut: Associations between mood and gastrointestinal distress in children exposed to adversity. Development and psychopathology, 1-20.
Hemmings, S. M., Malan-Muller, S., van den Heuvel, L. L., Demmitt, B. A., Stanislawski, M. A., Smith, D. G., ... & Marotz, C. A. (2017). The microbiome in posttraumatic stress disorder and trauma-exposed controls: an exploratory study. Psychosomatic medicine, 79(8), 936.
Jeppesen, R., & Benros, M. E. (2019). Autoimmune Diseases and Psychotic Disorders. Mental Health Centre Copenhagen, Gentofte Hospital, Copenhagen University Hospital, Hellerup, Denmark.
Lanciego, J. L., Luquin, N., & Obeso, J. A. (2012). Functional neuroanatomy of the basal ganglia. Cold Spring Harbor perspectives in medicine, 2(12), a009621.
Milaniak, I., & Jaffee, S. R. (2019). Childhood socioeconomic status and inflammation: A systematic review and meta-analysis. Brain, behavior, and immunity.
Obrenovich, M. (2018). Leaky gut, leaky brain?. Microorganisms, 6(4), 107.
Renna, M. E., O'toole, M. S., Spaeth, P. E., Lekander, M., & Mennin, D. S. (2018). The association between anxiety, traumatic stress, and obsessive–compulsive disorders and chronic inflammation: A systematic review and meta‐analysis. Depression and anxiety, 35(11), 1081-1094.
Song, H., Fang, F., Tomasson, G., Arnberg, F. K., Mataix-Cols, D., de la Cruz, L. F., ... & Valdimarsdóttir, U. A. (2018). Association of stress-related disorders with subsequent autoimmune disease. Jama, 319(23), 2388-2400.
Swedo, S. E., Frankovich, J., & Murphy, T. K. (2017). Overview of treatment of pediatric acute-onset neuropsychiatric syndrome. Journal of child and adolescent psychopharmacology, 27(7), 562-565.
Westwell-Roper, C., Williams, K. A., Samuels, J., Bienvenu, O. J., Cullen, B., Goes, F. S., ... & Krasnow, J. (2019). Immune-Related Comorbidities in Childhood-Onset Obsessive Compulsive Disorder: Lifetime Prevalence in the Obsessive Compulsive Disorder Collaborative Genetics Association Study. Journal of child and adolescent psychopharmacology.