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What Is PANS/PANDAS? And Why Are Cases on the Rise?

Jill C. Carnahan, MD
Jill C. Carnahan, MD
Founder, Medical Director, Flatiron Functional Medicine

Imagine a loving child who’s been hitting all of their developmentary milestones. Then, seemingly overnight, she becomes so aggressive and full of rage that she’s kicked out of her preschool.

Or, a high-achieving, straight-A middle school student that suddenly begins having difficulty concentrating or even remembering what he learned the day before.

Or, how about a bubbly and social teenager that has a complete personality change and can no longer leave the house due to severe anxiety.

Unfortunately, for a growing number of parents, these frightening and heartbreaking scenarios have become their reality. More and more children are being diagnosed with autoinflammatory neurological disorders known as PANS and/or PANDAS. Today, we’re going to dive into exactly what PANS/PANDAS is, why cases are on the rise, and what you can do to minimize your own child’s risk of developing these disorders.

What is PANS?

PANS and PANDAS are both related autoimmune conditions that disrupt children’s neurological function. PANS is an acronym for Pediatric Acute-onset Neuropsychiatric Syndrome. PANS is a broad classification and can be caused by nearly any infection. Some more common infectious agents that have been linked to PANS includes:1

  • Mycoplasma pneumonia
  • Influenza (the flu)
  • Epstein Barr (Mono)
  • Borrelia Burgdorferi (Lyme disease)
  • Varicella (Chickenpox)
  • Herpes simplex
But any infection that triggers an immune response can potentially cause PANS.

What is PANDAS?

PANS also encompasses the more well-known subset of this disorder known as PANDAS. PANDAS is an acronym for Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal infection.2 As the name implies, PANDAS is triggered by a streptococcal (strep) infection.

PAN and PANDAS are grouped together because PANDAS is considered a subset of PANS – with both conditions causing severe neurological symptoms. Let’s take a look at exactly what these oftentimes alarming and scary symptoms can look like.

What Are the Symptoms of PANS/PANDAS?

PANS and PANDAS cause a sudden, and rapid-onset onset of neurological symptoms – meaning symptoms involving the brain, spinal cord, and all nerves throughout the body. PANS and PANDAS affect children, typically anywhere from age three through puberty. Seemingly overnight, children can present with symptoms including:3

  • Obsessive-compulsive thoughts: the inability to put thoughts out of their mind or a strong urge to perform repetitive actions.
  • Tics or purposeless motor movements: this may be uncontrolled repetitive symptoms such as jerky movements, sounds (like grunts), or repeating words over and over.
  • Mood changes and mood swings: this can include irritability and moodiness as well as inappropriate emotional responses such as laughing or crying unexpectedly.
  • ADHD type symptoms: such as difficulty concentrating, fidgeting, inability to sit still, and hyperactivity.
  • Separation anxiety: severe “clinginess” or difficulty being separated from parents or caregivers.
  • Changes in motor skills: often this is seen as a sudden acute difficulty with handwriting and other fine motor skills.
  • Sleep problems: children may have difficulty falling or staying asleep.
  • Increased urination: this can manifest as night-time bedwetting, an increase in urination frequency during the day, or both.

These symptoms are almost always abrupt and dramatic – causing children to change almost overnight and out of the blue. But how exactly does PANS/PANDAS cause these sudden and frightening changes in children?

What Causes PANS/PANDAS?

PANS/PANDAS is directly caused by an infection, either streptococcal or otherwise. Regardless of the infectious agent, the process goes something like this:3,4

  • Step 1: Your child comes into contact with an infectious agent and an infection is contracted. Streptococcal bacteria and other infectious microorganisms have evolved to survive in the human body by evading our immune systems for as long as possible. These microbes essentially “hideout” in your child’s body – putting specific molecules on their cell walls that are nearly identical to the molecules found on your child’s own tissues. This is called “molecular mimicry” and helps these foreign invaders evade detection so they can begin replicating.
  • Step 2: Eventually the immune system is alerted to these foreign invaders and an attack is launched in an attempt to neutralize the threat. But because these foreign microbes closely resemble the host cells, the immune system begins mistakenly attacking the invading microorganisms and the healthy cells that were mimicked.
  • Step 3: In PANS/PANDAS, the immune system begins targeting a part of the brain known as the basal ganglia. The basal ganglia is responsible for motor functions and learning as well as behaviors and emotions.5 So, as the immune system launches its misguided attack on the basal ganglia, inflammation levels skyrocket – causing a rapid and severe onset of neurological symptoms.

So what are the next steps if your child presents with the intense and debilitating symptoms seen in PANS/PANDAS?

Is There Treatment for PANS/PANDAS?

Unfortunately, because PANS/PANDAS manifests as neuropsychiatric issues, cases are often misdiagnosed as behavioral disorders or mental illness – oftentimes resulting in children being placed on psychiatric meds. But when properly diagnosed, treatment of PANS/PANDAS requires addressing the root cause of the symptoms – the underlying infection and subsequent inflammation and autoimmune response.

Typically PANS/PANDAS is treated with anti-infective and/or immunological treatments. Anti-infectives target the underlying infection, and immunological treatments target the immune system. Treatment may resolve symptoms, but in some cases, symptoms may only be diminished – leaving children with ongoing neuropsychiatric issues. This often requires cognitive-behavioral therapies to manage lingering symptoms. 

Undoubtedly, as a parent, the thought of your child potentially contracting PANS/PANDAS and dealing with the life-altering effects of these disorders is extremely concerning. And what’s more concerning, is that cases of PANS/PANDAS are on the rise.

Why Are PAN/PANDAS Cases Are on the Rise?

Exposure to germs and the contraction of infections are inevitable in children. In fact, this activation of the immune system is a crucial part of development and building acquired immunity. But the problem arises when exposure to these infectious agents causes the immune system to go awry.

You see, modern life has a major impact on both children’s and adult’s immune systems. Certain factors can increase the likelihood of a child’s immune system misfiring and causing autoinflammatory conditions such as PANS/PANDAS. Factors that negatively impact the immune system and increase the risk of autoimmunity include:

  • Increased exposure to toxins and inability to properly detox
  • Gut dysbiosis and nutritional deficiencies
  • Increased stress levels and inadequate sleep

Let’s take a deeper look at how addressing these factors and prioritizing immune health can decrease your child’s risk of developing autoinflammatory disorders like PANS/PANDAS.

Ways to Support Your Child’s Immune System

While there are certainly no guarantees when it comes to your child’s health, the most powerful weapon we have against autoinflammatory disorders is keeping the immune system in tip-top shape. Some of the best ways you can keep your child’s immune system firing on all cylinders include:

Reducing Toxic Burden

We’re all exposed to countless potentially harmful toxins on a daily basis. Our bodies are designed to process out these toxins and maintain homeostasis. But when exposure to toxins overwhelms the body’s ability to properly detox and they begin to accumulate, it can spell trouble.

You see, a build-up of toxins activates your child’s immune system, causing low-level inflammation. Over time, this constant activation overworks the immune system. This not only depletes your child’s immune system’s resources – leaving it with less energy to direct at potential threats – but can also increase the chances of their immune system misfiring and the development of autoinflammatory conditions.

While it’s impossible to entirely avoid exposure to toxins, there are some simple steps you can take to make your child’s environment less toxic and reduce their overall toxic burden. Head over to my article How to Boost Your Immune System by Reducing Your Toxic Burden to learn exactly how you can start addressing the toxin levels in your home today.

Focusing on Gut Health

The immune system and the gut are intricately linked. In fact, the gut houses approximately 70% of your immune cells and plays an integral role in coordinating and regulating immune responses. So it’s no surprise that if gut health is out of whack, then the immune system can’t function properly.

There are two primary components to keeping your gut – and subsequently your immune system – happy and healthy:

  1. The integrity of the lining of your gut: Your child’s digestive tract is frequently exposed to foreign pathogens through the food and drinks they ingest. The lining of the gut is designed to keep these potentially dangerous microorganisms sealed up tight so they can be safely eliminated.
  2. The microbiome: Millions of different beneficial microorganisms reside in your child’s gut. This delicate ecosystem plays a crucial role in communicating with the immune system, keeping “bad” bacteria in check, and producing essential metabolic compounds.

Supporting both of these components of gut health is pivotal when it comes to supporting immune function. Some simple ways to help keep your child’s gut healthy and happy include:

  • Build meals around real whole foods. Teach your children to fill up on fresh fruits and veggies, high-quality protein, and healthy fats.
  • Minimize sugary foods and simple carbs. Sugar-laden and processed foods can cause an imbalanced microbiome and increase inflammation.
  • Introduce beneficial bacteria by incorporating fermented foods like sauerkraut, coconut yogurt, kombucha, and kefir. Or try a kid-friendly probiotic – just make sure to consult with your pediatrician first.

To learn more about how a healthy gut equals a stronger immune system, head over to my article How to Heal Your Gut for a Stronger Immune System.

Prioritizing Rest and Relaxation

With schoolwork, standardized tests, sports, and extracurricular activities, kids today have a lot of stress and seem to be constantly on the go. And that stress can put a serious damper on their immune systems.

Teaching your kids to balance activities and achievements with rest, fun, and connecting with others is crucial to their overall health. Help them find ways to channel and process the unavoidable stress with things like journaling or meditation. Keeping stress levels in check is one of the most powerful ways to support your child’s immune function.

So, How Worried Should I Be About PANS/PANDAS?

As a parent, you love your children and the thought of them developing PANS/PANDAS feels like a nightmare that you never want them to go through. That’s why staying informed and supporting your children’s immune systems is crucial.

If you’re concerned that your child may be suffering from the effects of either of these debilitating disorders, I strongly encourage you to seek the expertise of an experienced Integrative and Functional Medicine Practitioner. If you’ve never worked with an Integrative and Functional Medicine Practitioner, click here to learn how to pick the right one for your family.

When it comes to the health of your family and bolstering your child’s defenses against autoinflammatory disorders like PANS/PANDAS, you are your child’s best advocate. Staying educated, creating a healthy lifestyle for your family, and teaching your children to prioritize their own health is a powerful way to minimize the risk of developing autoimmunity.

And I’m here to help you. I’m dedicated to bringing my patients and readers the knowledge and resources they need to stay educated and feel empowered. So if you want access to my exclusive and very best tips when it comes to staying healthy, I encourage you to sign up for my newsletter. All you have to do is enter your name and email in the form below and you’ll get all my best content delivered straight to your inbox!

If you’d like to read more on PAN/PANDAS you may also want to read blog articles like these by my friend, Dr. Suzanne Gazda, Integrative Neurologist.

References

  1. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4340805/
  2. https://www.pandasppn.org/what-are-pans-pandas/
  3. https://www.nimh.nih.gov/health/publications/pandas/index.shtml
  4. https://www.moleculeralabs.com/pans-and-pandas-overview/
  5. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3543080/

* These statements have not been evaluated by the Food and Drug Administration. The product mentioned in this article are not intended to diagnose, treat, cure, or prevent any disease. The information in this article is not intended to replace any recommendations or relationship with your physician. Please review references sited at end of article for scientific support of any claims made.

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For more:  https://madisonarealymesupportgroup.com/2017/10/01/panspandas-steroids-autoimmune-disease-lymemsids-the-need-for-medical-collaboration/

https://madisonarealymesupportgroup.com/2017/12/01/guidelines-for-treating-pans-its-real/

https://madisonarealymesupportgroup.com/2020/03/24/is-your-child-crazy-or-sick-mental-illness-vs-medical-disorder/

https://madisonarealymesupportgroup.com/2017/10/08/misdiagnosed-how-children-with-treatable-medical-issues-are-mistakenly-labeled-as-mentally-ill/

https://madisonarealymesupportgroup.com/2019/05/13/one-familys-story-of-strep-lyme-disease-and-pans-pandas/

https://madisonarealymesupportgroup.com/2019/07/08/psychosis-and-pans-meet-plasmapheresis-our-final-slam-dunk/

https://madisonarealymesupportgroup.com/2018/08/01/the-3-pans-myths-that-are-ruining-lives/

https://madisonarealymesupportgroup.com/2018/07/28/stories-of-pandas/