When Strep Strikes the Brain: Understanding PANDAS Syndrome in Children

PANDAS often comes on suddenly – I’ve heard parents describe their child seeming to change overnight, becoming unrecognizable. Obsessive compulsive behaviors, tics, mood and behavior changes, and/or neurological symptoms may seem to come out of nowhere.

As a parent myself, it’s hard to imagine many things scarier than that.

But in addition to being a parent, I’m also a functional medicine practitioner. And that means I know there is always an explanation, even for things that seem completely unexplainable – and that there is always a way to get to the root cause, and to heal the whole person.

PANDAS is known to be caused by an autoimmune reaction to a strep infection. But complete and holistic healing requires us to go a bit deeper, tending to the environment of the gut, brain, and immune system to restore balance and prevent future problems.

I know it’s hard to know what to believe and who to trust when it comes to PANDAS. That’s why I’ll do my best to provide simple, clear explanations for everything I discuss here, so that you can come away with a greater understanding and a better toolkit for your child’s health.

Below, you’ll find an overview of what PANDAS is, including symptoms, causes, and testing options, followed by several whole-body focused strategies you may not have come across yet that can help your child recover and thrive. I’ll also address a few myths and misconceptions around PANDAS.

What Is PANDAS Syndrome? An Overview

PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) is the name for a group of behavioral and/or neurological symptoms that show up in children following a strep infection. PANDAS is typically thought to affect children between 3 and 12. (1)

It looks different for everybody, but many kids with PANDAS will experience OCD symptoms, vocal tics (as with Tourette syndrome), mood abnormalities, and changes in motor skills.

Here are a few of the most common symptoms of PANDAS:

• Obsessive and/or compulsive behaviors (obsessions may involve intense fears, concerns, or troubling and repetitive thoughts or images; compulsions may include uncontrollable, repetitive behaviors or rituals, like needing to check things, touch things, turn lights on or off, or ask for reassurance multiple times)
• Tics (uncontrolled sounds or movements)
• Mood changes, including outbursts of rage or increased irritability; emotional lability (rapid or extreme changes in mood)
• Separation anxiety
• Reduced coordination; clumsiness; challenges with handwriting or other motor skills
• Difficulty focusing or learning; fidgeting; hyperactivity; ADHD-like behavior
• Trouble sleeping
• Decreased appetite or lack of interest in food
• Bedwetting
• Anxiety
• Depression
• Increased sensitivity to light or sound; other sensory concerns

The most commonly recognized pattern of PANDAS is that symptoms come on very suddenly, and then occur in episodes. A child may experience symptoms for a couple of days or a few weeks, then seem to return to normal for a period of time, and then flare up dramatically again, especially if they get another strep infection.

I say “most common” because not all PANDAS cases fit into this box. I’ll talk about this more below, but PANDAS, like any other kind of autoimmunity, falls somewhere on a spectrum.

Using more of a functional medicine, bio-individuality lens, we can understand that just because the onset of symptoms isn’t sudden or dramatic doesn’t necessarily mean that a child is not experiencing an autoimmune, neuropsychiatric response to strep (i.e. PANDAS).

PANDAS is a subset of PANS (Pediatric Acute-onset Neuropsychiatric Syndrome). Basically, PANS, which involves the same kinds of symptoms, can occur following different types of viral or bacterial infections including Lyme disease or influenza, while PANDAS specifically occurs following a streptococcus infection.

A Closer Look at What Causes PANDAS

PANDAS is an abnormal immune system response to a streptococcal infection (this can be strep throat, scarlet fever, or a strep infection that affects a different part of the body like the skin).

It’s right there in the name of the condition that PANDAS is associated with strep. But of course, not everyone who gets strep throat gets PANDAS. What causes one child to experience this neuropsychiatric response while another doesn’t?

First, let’s take a look at how strep throat might lead to something as seemingly unrelated as obsessive compulsive behaviors and neuropsychiatric symptoms in the first place.

Strep bacteria are crafty. They’re experts at hiding, resisting detection from the immune system. So how do they hide? By disguising themselves so that they look just like molecules we find in our normal, healthy bodies.

This is called “molecular mimicry”, and it’s one of the primary mechanisms behind autoimmune diseases of all kinds. (2)

What can happen with molecular mimicry is that, when the immune system eventually recognizes these disguised molecules as foreign and launches a defensive attack, the body’s healthy and normal molecules – the ones being mimicked – can get caught up in the crossfire. This is how the immune system may come to attack the self (autoimmunity).

In the case of strep and PANDAS, it’s a part of the brain called the basal ganglia that is thought to be predominantly affected. This region of the brain is involved in emotional regulation, behavior, motor skills and function, and sensory processing.

When the immune system attacks parts of the basal ganglia, it can lead to the symptoms we associate with PANDAS. (3)

Why Do Some Kids Get PANDAS When Others Don’t?

The next question is – what makes one child more susceptible to this than another?

Conventional medicine, if it recognizes PANDAS at all, likes to paint a picture of something sudden and random. But even if the onset of symptoms is sudden, what conditions in the body might make an autoimmune response more likely?

Chronic inflammation, imbalances in the gut microbiome, and hidden immune system dysregulation may all increase the likelihood of PANDAS or PANS.

PANDAS may also be more common among those with a family history of autoimmune disease or rheumatic fever, as well as for those who have a personal history of frequent strep infections. (4)

Some think PANDAS may be more common in males than in females. From my perspective, it’s more likely that it’s just less commonly diagnosed in females as, like many behavioral conditions including autism and attention-deficit/hyperactivity disorder (ADHD), symptoms often present themselves differently (and sometimes in less “obvious” ways) in girls.

Testing for PANDAS

There’s no specific lab test for PANDAS, but there are several tests that can help us understand what’s going on, alongside understanding a child’s symptoms and history.

The diagnostic criteria for PANDAS include: (5)

• Sudden onset of symptoms
• Symptoms including OCD (obsessive-compulsive disorder)-like behaviors, tic disorders, or both; neurological changes
• A confirmed strep infection within the last few months

A throat culture or rapid strep test can confirm whether your child has an active strep infection, but as symptoms often occur several days, weeks, or months after an active infection, an anti-strep antibody titer test (a simple blood test) is often recommended.

This test looks at whether or not your child is producing antibodies to strep, and how many. An elevated anti-strep antibody titer indicates a recent strep infection. Remember that this test itself doesn’t confirm PANDAS – elevated anti-strep antibodies are normal, healthy, and expected if someone has had a recent strep infection.

If we don’t see elevated anti-strep antibodies, the next step might be to look more broadly at PANS (the same symptoms but triggered by a different kind of infection).

In functional medicine, we may recommend additional tests to help develop a more complete picture of what’s going on in the body. Depending on the individual, we may look at:

• Blood testing for inflammatory markers like C-reactive protein (CRP)
• A complete metabolic panel to assess liver function, blood sugar, and overall health
• Gut microbiome testing (using a stool sample) to identify microbial imbalances that may relate to inflammation and immune system reactivity, as well as certain kinds of strep bacteria that can live in the gut
• Food sensitivity testing to help determine what else may be contributing to immune system reactivity

PANDAS Myths, Misconceptions, and Controversy

There are several myths and misconceptions surrounding PANDAS, which is still thought of as a controversial diagnosis in and of itself.

While we definitely still don’t know everything there is to know about PANDAS, I want to help clear up a few of the biggest misconceptions around PANDAS from a functional medicine perspective.

Is PANDAS a Real Condition?

First of all, yes. PANDAS is one of those “controversial” conditions that some conventional doctors will say doesn’t “exist”, mostly because of relatively limited research understanding. (2) While PANDAS syndrome, like all syndromes, shows up differently for different people, there is certainly an observable link between strep infections and autoimmune, neuropsychiatric reactions for some children.

Is PANDAS Always Sudden?

When institutions do recognize PANDAS, the diagnostic criteria are pretty narrow. Many clinicians and researchers believe that for a child to have PANDAS, their symptoms have to come on very suddenly and be quite dramatic. But by looking at PANDAS through such a narrow lens, we’re likely missing many children who experience more subtle reactions. Autoimmunity is always a spectrum, and it’s never exactly the same for everyone.

Can PANDAS Occur Without Strep Throat?

Group A streptococcal infections (the kind that are associated with PANDAS) present most commonly as strep throat, but sometimes affect other areas like the skin. Some children develop strep infections that affect the area around the anus and rectum, causing a rash. These other types of Group A strep infections can also lead to PANDAS.

If no strep infections can be found, your clinician may consider other kinds of infections that can cause PANS (the larger group of autoimmune neuropsychiatric syndromes that PANDAS belongs to).

Beyond Antibiotics: Holistic Treatment for PANDAS

If PANDAS is recognized at all within the conventional medicine paradigm, it’s essentially treated in two ways: by killing off the strep infection with antibiotics, and then by treating the symptoms like a separate psychiatric disorder (sometimes with behavioral therapy, sometimes with SSRIs or other drugs).

In functional medicine, we always want to look at the bigger picture. A course of antibiotic treatment may be necessary to get rid of a strep infection, and cognitive behavioral therapy (CBT) can certainly be helpful. But let’s take a step back. What about the environment within the child’s body that led to immune system overreactivity? What about restoring the environment now?

Conventional medicine usually finds that PANDAS is treatable, but returns if a strep infection comes back. Some practitioners will actually keep kids on antibiotics indefinitely to try to prevent future episodes – but antibiotics are known to disrupt the gut microbiome and can exacerbate the imbalances that lead to inflammation and autoimmunity in the first place. (6)

Selective serotonin reuptake inhibitors (SSRIs) and other antidepressants also have tons of known side effects, and don’t get to the root of the problem.

In a functional medicine model, we still want to start by treating and removing any active infections, and at the same time we want to get to work on healing, repairing, and restoring a child’s health from the inside out.

There are several dietary approaches, herbal remedies, targeted supplements, mind-body strategies, and other tools that we can use to rebalance the gut microbiome, heal an overactive immune system, reduce inflammation, and prevent future issues in a holistic way.

Dietary Approaches

An anti-inflammatory, whole foods based diet is an incredibly important component of healing (not to mention staying healthy).

Removing gluten, dairy, processed foods, vegetable oils, and added sugars is a great place to start. All of these foods can increase inflammation and disrupt the gut microbiome and the immune system, contributing to autoimmunity and behavioral and cognitive symptoms.

Many children with PANDAS are also particularly sensitive to things like dyes and added flavors. In some cases, a food sensitivity test or an elimination diet may help to uncover additional sensitivities.

I know it can be challenging to implement a new diet for kids in general, and especially for those with PANDAS, who often struggle with food aversions or become pickier eaters. Personalize the diet with what works for your child, but work to emphasize fresh, whole foods as much as possible.

LISTEN: Solomon Cole: Dr. Will's Son On Navigating Picky Eating, Parent-Teen Views On Technology, Social Media + Wellness Routines 

Gut Health Support

Gut health, brain health, and immune system health are inextricably linked. Around 70% of immune cells reside in the gut, and the gut and brain are in constant communication via the gut-bran axis. (7)

Both antibiotics and strep infections themselves are known to disrupt the gut microbiome. It’s also likely that many kids with PANDAS may have imbalances in the microbiome to begin with, making them more susceptible to autoimmunity. (8)

Rebalancing the gut microbiome and healing the gut lining can make all the difference when it comes to restoring a child’s health. A great place to start is with a probiotic supplement, which helps to bring the gut microbiome back into balance.

Herbs and Supplements

There are several different herbs and supplements that may help. A functional medicine practitioner can help you choose which ones may be most beneficial for your child’s individual case. Here are a few examples:

• Omega 3s can help to reduce inflammation and support brain development, cognitive function, and mood (9)
• Curcumin has powerful anti-inflammatory properties and helps with immune system function (10)
• Berberine, oil of oregano, and other herbs have antimicrobial and antibacterial properties, and can be used in conjunction with or instead of prescription antibiotics to help get rid of infections
• Vitamin D is essential for mental health and immune system function, and more than 90% of kids with PANDAS may be deficient (11)
• Quercetin and luteolin can help to stabilize overactive mast cells that may be involved in immune system reactivity
• Zinc and magnesium are often low in kids with PANDAS (a simple blood test can help to determine this)
• Probiotics can help to rebalance the gut microbiome which may be disrupted due to antibiotics and strep itself, and which plays a huge role in immune system function
• Passionflower and chamomile may help to calm and rebalance an overactive nervous system
• Chinese skullcap may help to regulate an abnormal immune system response (12)

Other Strategies

• Mind-body practices are an important component of any holistic PANDAS treatment strategy. Depending on your child’s age, introducing them to breathing techniques or mindfulness meditation, or programs like equine therapy may help. Cognitive behavioral therapy (CBT) is also helpful for many children. (13)
• Movement and exercise can make a huge difference when it comes to balancing mood, improving sleep quality, and reducing stress.
• Acupuncture may be helpful for some kids with PANDAS.

Other modalities that may be explored especially for those who don’t respond to other treatments include intravenous immunoglobulin (IVIG) therapy (this can help some kids, but is quite invasive, expensive, and may cause side effects, so it’s definitely not the first option to turn to); plasma exchange; and CBD (which may help to calm both the nervous system and an overactive immune system). (14, 15)

A More Comprehensive Approach to PANDAS

PANDAS can be challenging to navigate, but with a holistic, functional medicine approach that considers the whole person, it’s absolutely possible to restore balance and see your child thrive again.

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