Part 1: Viruses, Infections, and the Mental Health Risks: If I Only Knew…
It’s pretty common for people to worry about their children’s health. But I would guess most people don’t think about how viruses, infections, or even an allergy could contribute to their child’s mental, physical, and behavioral health over time. It’s easy to miss how the lasting effects of everyday viruses and infections could be quietly adding up in the background. That was the case for my family. And really—how many people know about the complexities of the immune system, the nervous system, and the things that can go wrong?
Our oldest child was healthy. Our middle child had numerous ear infections, tubes placed as a result, and adenoids removed before age two, but then all seemed normal. By the time our third child came along, life was busy and it didn’t occur to me that the numerous infections she experienced as an infant might be problematic later in life. Our doctor reassured me that building a strong immune system was a good thing. And life went on.
Unfortunately, we were unknowingly headed for a crash course in neuroinflammation and the difficult path of navigating the world of chronic illness—she was 10 when things really started to become challenging. We struggled to find knowledgeable doctors. Dealing with health insurance and finding ways to get off-label treatments would soon become a familiar game we reluctantly played. Chronic illness and treatment-resistant mental health (which really wasn’t a household term 10 years ago) require a different approach—and they are intricately intertwined and seem to be increasingly common. (Why does it feel like everyone has an autoimmune disease?)
Off-label Treatments
Off-label treatments involve using medications or therapies for conditions or purposes not officially approved by regulatory authorities, based on a clinician's judgment and supporting evidence. Many chronic illness diagnoses have no approved treatment options - making it difficult to find doctors willing to prescribe off-label options as well as the challenges that arise obtaining insurance approvals and coverage. Many off-label treatments are expensive and not an option for out-of-pocket payment.
But what if there were clues along the way that could have forewarned us of what was to come? They were certainly there. Maybe it wouldn’t have changed our course entirely, but understanding what the clues meant could have made the path a little less scary and helped with decision-making and finding the right doctors. Treating an illness before it becomes long-term, or chronic, is imperative to better outcomes, and some of the treatment decisions aren’t simple or easy. Many families do not make it through these challenges in one piece, and I had my own moments of doubt for us as a family. As someone from the advocacy world, I hear this same story over and over.
Mental health symptoms (like OCD, anxiety, panic attacks, depression, and other sudden unexplained behavior changes including aggression and trouble with impulse control) can be triggered by common viruses, infections, or even chronic illnesses. And chronic illnesses can include some pretty common diagnoses – asthma, seasonal allergies, psoriasis, food allergies, and repeat sinus infections. Those who live with autoimmunity or infections requiring hospitalization are at an even greater risk for mental health issues.
Children and adults can experience brain inflammation, or neuroinflammation, that is caused by illnesses, allergies, autoimmune conditions, or even unknown causes. They can experience debilitating mental health symptoms that may not respond to treatments traditionally used to address mental or behavioral health conditions. And the connections between these symptoms, brain inflammation, and the immune system are poorly understood and extremely understudied.
Inflammation can have a significant influence on both the body AND brain, and often times clinicians play (or don’t play) a vital role in guiding families through these difficult diagnoses and misdiagnoses. By exploring the connection between physical health, mental health and inflammation, I hope to empower you to recognize these issues sooner rather than later in your own life, or in the life of someone you love. I tried to weave a little of my family’s story into the definitions and provide simplified scientific explanations. It is my hope that through the research and advocacy work of the Brain Inflammation Collaborative, we can keep pushing the awareness that many clinicians and families simply don’t have.
This blog is not meant to be used as medical advice, and should not substitute or supplement medical treatment by a qualified healthcare professional. It is a combination of scientific resources and anecdotal experiences that might help you connect the dots in your own child’s medical journey. Or maybe it is your own story.
For treatment – that’s another topic for another day. More research is needed to develop better diagnosis and treatment protocols (a structured plan that provides a framework for healthcare professionals to deliver consistent and evidence-based care). That’s what the Brain Inflammation Collaborative strives to achieve.
Inflammation Triggering Factors – Including Our Story
There are many ways that inflammation can be triggered to initiate immune system dysregulation. For us, the infection piece was profound, but while we were going through it, it didn’t seem noteworthy. Strange, right? It seemed to always come with a rational explanation. In retrospect, it all seems so obvious now. I hope this information will help you accelerate your journey toward an accurate diagnosis.
We need to learn more about infections and how they impact our overall health. More research, better data, will inform a future in which prevention, screening, testing, and treatment are common in general medical care.
Infections
Viral, bacterial, or fungal infections can lead to an inflammatory response as the body attempts to fight off pathogens. Pretty straight forward.
But the basic knowledge in society of the possible effects of an infection on the brain, body, and mental health is little to non-existent. Chances are you WILL know someone impacted by unexplained symptoms – physical and mental – after an infection or virus. A doctor should be sharing background information on chronic illnesses, infections, mental health, and things to watch for so that you are well informed. Kids are exposed to many infections and viruses, and it’s easy to miss how they add up over time. Not knowing and understanding the impact of an infection – whether it’s heavily taxing on your body, repeated, or for some, simply not noteworthy – can be harmful. Genetics and certain other pre-existing health conditions may play a more direct role, while for others, it might not seem that straightforward.
Your doctor should be asking you about your family history of autoimmunity, asthma, allergies, psoriasis, chronic sinus infections, strep infections, rheumatic fever, Epstein-Barr, MS, and even Ehlers-Danlos Syndrome (more on that later). Those are just some of the examples of things that could be potential warning signs of more to come when your child has repeated infections or an infection that is difficult to get rid of (strep can be especially challenging in some kids). It’s important to note, that for some people, just having a cold or the flu or other seemingly innocuous virus can trigger a cascade of symptoms that no one seems to have answers to.
Exposure to infections happens often for school-age kids (and younger if they attend daycare or have older siblings). Viruses and other infections trigger an inflammatory response every single time your child gets sick. This is an important part of how their bodies fight off the infection, and this response should end when the infection has resolved. The trouble comes when the virus isn’t completely eradicated or when the immune system doesn’t get the memo to stand down when the threat is gone. Viruses can remain dormant within the body, waiting to be triggered again. And yet for others, the inflammation may not subside, creating a cumulative process as the child goes from a routine case of strep throat or an ear infection to an eventual breaking point for the immune system.
When my daughter was three years old, she battled strep throat for an entire year. When she was five, she started experiencing autonomic issues (racing heart) that her doctor said were because she was just more aware of her body. When she was in 5th grade, OCD and behavior changes started after a dental infection. We hit our breaking point during the summer between her 6th and 7th grade school years after a tick bite and a wave of symptoms occurred. It would be another year before any meaningful treatment began.
We were lucky – it took us less than the average of 4 to 5 years for most families to get an accurate diagnosis. I slept little and spent late nights researching, working through the logistics of doctor appointments, and navigating health insurance approvals. Online resources were exponentially increasing and I read everything I could find.
I tried to ignore the eye rolling that clinicians gave us as we entered the room with my very large binder of papers. Occasionally, I cried on the way home from difficult appointments. I had two doctors raise their voices with me, frustrated with my questions and with the information I found online. This goes back to the basic knowledge that’s needed surrounding chronic illness and inflammation. They simply aren’t taught. And I was on the right path even with my very limited background knowledge.
Many chronic illnesses that were once thought to be rare, really aren’t all that rare. Just rarely diagnosed. Finding a doctor well-versed in infection-associated illnesses is crucial, and unfortunately, difficult. When you find a doctor who is dismissive or doesn’t seem to understand, don’t waste time. Move on. Make multiple appointments with multiple doctors within the same specialty and with multiple places. Sometimes doctors aren’t the right fit – and that’s okay. You don’t want to start over again waiting (sometimes over a year) for another specialist when the quality of life for you and your family has already become compromised. Find advocacy or support groups in your area or online that might have recommendations of local doctors that are well-respected (even this might not be super helpful). Don’t rule out traveling, even out of state, if you are able. Virtual visits might also be an option (new since Covid), but know that many chronic illness practices are private and don’t take insurance. This can cause great economic hardship for families. As per Dysautonomia International’s link to statistics above, 50% of patients travel more than 100 miles to find appropriate medical care. We traveled from Wisconsin to Minnesota, Massachusetts, and Oklahoma – all playing an essential role in gathering diagnoses and information that we pieced together ourselves.
Watch For The Signs
I also had to go with my gut – a lot. Don’t let anyone downplay your concerns. There HAS been positive change in the past 12 years, although sometimes it’s hard to see. Dysautonomia International reports that 69% of POTS patients are first diagnosed with an anxiety disorder, and 59% are told it’s all in your head.
My daughter had thrush 4 or 5 times as a baby. She had not been on antibiotics at that time – which could have been a telltale sign that maybe an immune issue was the cause. She didn’t mind the antifungal drops that were prescribed, and the doctor didn’t seem concerned, so it was soon forgotten. As the youngest of three, time passed quickly and details often blurred. She had strep throat off and on for most of the year she started preschool, when she was three years old. We just couldn’t seem to shake it. Again, none of the doctors we saw were concerned—even when we experienced more than seven infections in one year. I wish I had known then about PANDAS/PANS and the connection to strep.
When she was five years old, she started saying her heart felt funny. And sometimes she would say she felt nervous when we were playing cards on a summer day without a care in the world. Maybe these were signs of autonomic issues. Many with POTS experience a racing heart and have their ‘fight-or-flight’ response triggered for no apparent reason. All her tests and scans came back normal, and our doctors weren’t well-versed in the signs, symptoms, and triggers of chronic illnesses.
Next up was a dental infection. A bump along her gum line turned out to be an abscessed baby tooth. Her dentist was able to remove it without incident. But soon after, symptoms of OCD and new, repetitive behaviors started. Small at first – but noticeable. She would shrug her shoulders and blink her eyes excessively as she did her homework. She would move her thumb back and forth over and over. Life was busy, and it was easy to dismiss or convince myself that it was no big deal. Was I overreacting? Was I overthinking it? It never occurred to me that the behaviors started after the tooth infection. Things only continued to escalate from there.
Throughout her childhood, she also had minor signs of Ehlers-Danlos Syndrome (EDS). For some people, symptoms are apparent, while they can be subtle for others. She did not crawl as a baby. When she did start walking, her feet pointed outwards. She often complained about ankle, knee, and wrist pain that would come and go. She repeatedly complained of stomach aches as a child, but our healthcare providers always explained it away. She was also clumsy – always dropping things. She has flat feet. She has some double-jointedness. Eventually, we would learn that people with EDS often have joint pain, GI issues, trouble grasping things with their hands, and more.
And finally…bacterial infections. I knew that deer ticks and Lyme Disease were bad, so when I found a teeny tiny tick embedded in her arm at the end of 6th grade, I have to admit, for the first time, I felt a little panicky. Immediately, the appropriate antibiotics were prescribed as a precaution, and I was told to relax. She would be okay. We caught it early.
That became a tipping point, and the dam seemed to burst within a matter of days – and life as we knew it changed forever.
Injury
Injury didn’t play a role in my daughter’s illness. But it’s important to note that it can.
Physical damage to tissues, such as cuts or sprains, also causes inflammation as part of the healing process. For kids in sports, head injuries and concussions can be a dangerous source of neuroinflammation.
Chronic Stress
Prolonged psychological stress can contribute to systemic inflammation. School, social media, family problems, and safety issues can play a role in this. There has been an increasing number of things written on the invisible epidemic of food insecurity in the US. Along with the obvious nutritional issues this creates, the stress of the child’s home life can contribute to chronic inflammation.
Add in the stress of being a teen, navigating social media, achieving good grades in school, performing in sports or music or the arts, applying for college, and/or finding a career path can lead to a constant state of stress. The body may respond with inflammation – especially in those prone to an overactive immune system. It’s those who are genetically predisposed that tend to find themselves in an endless loop of inflammation without knowing it.
Diet
High consumption of processed foods, sugars, and unhealthy fats can promote inflammation, while anti-inflammatory foods like fruits, vegetables, and omega-3 fatty acids can help mitigate it.
Diet definitely plays a role in inflammation in the body, but if your child is experiencing sudden unexplained mental health and physical health symptoms and your doctor tells you that your child just needs to eat better, it could be time to find a new doctor. Eating healthy or low-inflammatory foods can be helpful but it is not a cure nor are lifestyle choices like diet typically the main cause of debilitating neuroinflammation (after ruling out a food-based allergic reaction which can occur in things like Crohn’s, for example).
As we searched for answers for dizziness, light-headedness, nausea, joint pain, unexplained behavioral and mood changes, insomnia, separation anxiety, irrational fears, and gastrointestinal issues, we had a doctor literally scoff at the things my daughter was eating. I soon realized he was questioning the whole reason we were there, and he was no longer listening to what we were telling him. She was experiencing unexplained nausea and horrible stomach pains. She did not eat as much as she needed because she felt worse after eating. The nausea was contributing to appetite loss and inability to eat anything substantial.
I began to realize that the doctors started looking at me as a potential source of my daughter’s symptoms. We had to be careful as we were questioned to determine if her needs were being met or if she was in an abusive situation. Let me be clear. Abuse, neglect, and mistreatment are very real, severe problems that must be taken seriously. In my experience and based on the experiences of people I’ve interacted with, the blame or suspicion has disproportionately and unfairly shifted toward the family in cases of chronic illness. Sometimes parents’ intentions are questioned as well as the child’s. Mental health and chronic illness in kids can be at times a perilous road to navigate. Is it abuse? Is it Munchausen? Or is it a health condition the doctor didn’t learn about in medical school?
Allergies
Allergies are an increasingly common concern, affecting millions of people worldwide. They occur when the immune system reacts to foreign substances, known as allergens, which can include pollen, pet dander, dust mites, mold, and certain foods. Food allergies in particular are notable for their potential to trigger severe reactions, ranging from hives and swelling to anaphylaxis, a life-threatening condition. But oftentimes, a food allergy or food sensitivity may go undetected. Creating inflammation without the patient or the caregiver making any real connections to what’s being eaten as the culprit.
Research has also begun to explore the link between allergies and neuroinflammation, suggesting that allergic reactions might influence brain inflammation and contribute to neuroinflammatory and chronic illnesses. Inflammation caused by allergic responses has been associated with various cognitive or mood disorders. My daughter had allergies that caused dark circles under her eyes. No runny nose or other obvious symptoms, so no action seemed to be needed. But this was another clue.
After her initial diagnosis of postural orthostatic tachycardia syndrome (POTS), she was also diagnosed with Ehlers Danlos Syndrome (EDS) and mast cell activation syndrome (MCAS). She was even allergic to water temperature, mast cells release mediators (like histamine) inappropriately. She was able to return to some competitive swimming her freshman year, and hives would appear when she jumped in the cold water. Her coach sent me a photo asking if everything was okay; a painful reminder that my family’s homelife was sometimes questioned because of my daughter’s health conditions.
Allergy sufferers between 20 and 39 years old are 158% more likely to be diagnosed with major depressive disorder. Could allergies cause depression or be connected to it in some way? Experts believe that inflammation can “…activate areas of the brain that regulate depression and anxiety.”
Lifestyle Factors
Sedentary behavior, smoking, and excessive alcohol consumption can increase inflammation levels in the body. For young kids, smoking and alcohol are probably not an issue.
Kids in general are perceived to be more sedentary than they were before cell phones and video games. But again, a sedentary lifestyle is just one contributing factor among many; it’s not a root cause of severe symptoms. Simply being told to exercise more is not the answer. My daughter was a competitive swimmer, and doctors told us she needed to exercise to relieve her symptoms of lightheadedness and fatigue. If a doctor tells you that your child just needs more exercise when common sense says otherwise, it’s probably time to look further. It is well documented that those suffering from ME/CFS can do more harm if they over-exert themselves.
Stay tuned for the 2nd Installment that will include overlapping chronic illnesses and their symptoms, mental health aspects, navigating school and family issues, as well as using research and advocacy as an outlet!
Written By
Christy Jagdfeld
Co-Founder and CEO, Brain Inflammation Collaborative
