Not all children with PANS or PANDAS develop Obsessive-Compulsive Disorder (OCD), but a surprising number of kids with OCD do have underlying PANS or PANDAS—and the connection works both ways.
While many children with OCD show early signs of anxiety, others experience a sudden, dramatic onset of symptoms, often triggered by an infection.
Growing research into how infections impact the brain is revealing that both children and adults can experience abrupt, infection-driven OCD or other neuropsychiatric symptoms tied to PANS and PANDAS.
The symptoms of PANS/PANDAS and OCD can exist altogether and managing them start with calming the brain.
Why Is it Important to Understand the Link?
Understanding why your child has OCD can be a long and difficult journey. Many parents like you, confronted with this rapid shift to intense anxiety, obsessions, and compulsions, may wonder if something is seriously wrong or if they’re missing a deeper cause.
One of the reasons why it’s hard to manage OCD symptoms is they develop gradually and can be even harder to identify the root cause. OCD behaviors are often internalized, and when symptoms ebb and flow, any connection to infections or inflammation in the brain can be tough to recognize—especially when you’re in the thick of caring for your child.
When you’re able to recognize that infections like PANS/PANDAS may have led to your child developing OCD, it can offer clarity and a path forward; that your child’s OCD could only be an immune system response and not anything permanent; and that you can now go with a more personalized treatment approach and avoid misdiagnoses.
What are the symptoms of OCD?
Obsessive-Compulsive Disorder (OCD) is a clinical condition where a child or individual experiences intrusive, often distressing thoughts and fears (obsessions), which drive them to engage in repetitive actions or rituals (compulsions). These compulsive behaviors are their way of trying to reduce the overwhelming anxiety, calm their fears, or prevent something bad they believe might happen. Essentially, OCD is rooted in an urgent need to soothe uncomfortable feelings through mental or physical rituals.
It should be understood that OCD doesn’t look the same for everyone—it can vary widely depending on the type of obsessions and compulsions and how intense they are. Symptoms often wax and wane, with physical or emotional stressors causing flare-ups or changes in how the disorder presents.
For parents navigating PANS/PANDAS alongside OCD, understanding how OCD works and its diagnostic criteria is essential. By grasping the neuroscience behind OCD and recognizing how it interplays with PANS/PANDAS, you’ll be better equipped to support your child with the targeted interventions they need.
Tucker’s Story
Tucker and his two sisters all had PANS. For all three, it started with a sudden onset of OCD. After what his parents describe as a “nightmare” to find the right medical help, they were able to get the infections for all three kids under control.
Tucker was the only one of his siblings who still struggled with OCD. His parents kept thinking that if they better addressed the lingering infections and the physical damage to his gut, that the symptoms would resolve but they didn’t.
Once in our BrainBehaviorReset™ Program, they were able to see on a QEEG the impact on long term compounded stress and anxiety on Tucker’s brain. OCD results from the nervous system responding to a perceived or real stressor with compulsive, obsessive and ritualistic behaviors. Science shows us that this negative reinforcement loop reinforces the behaviors and until a person learns to stop feeding the OCD, the behaviors only grow stronger.
In Tucker‘s case, with neurofeedback, nutrients, parent education and ERP therapy for OCD in an innovative program, Tucker was able to completely eliminate all OCD symptoms. He and his parents learned to stop “feeding the OCD” and broke free from obsessive, intrusive thoughts that were controlling his life. They got their happy kid and family back!
When Should You Consider PANS and PANDAS When Your Child Has OCD?
When OCD symptoms suddenly emerge and feels like they came from out of the blue, there’s a huge chance it is caused by PANS/PANDAS.
PANDAS and PANS are known to cause a sudden onset of severe OCD symptoms, as well as changes in a child's behavior, cognitive and motor functions.
Strep Linked to OCD: What Research Says
Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus (PANDAS) has been documented in medical literature for decades.
PANDAS is characterized by the sudden and rapid onset of obsessive-compulsive thoughts, behaviors, and rituals, often accompanied by movement and behavioral abnormalities. This condition typically follows an infection with *Streptococcus pyogenes* or Group A Strep.
In some cases, strep bacteria or Scarlet Fever can lead to rheumatic fever within one to five weeks, as noted by the CDC.
Studies at the National Institute of Mental Health (NIMH) have shown that some cross-reactive antibodies target the brain, which causes OCD, tics, and the other neuropsychiatric symptoms of PANDAS.
I recall learning about OCD resulting from strep throat when I was in graduate school in the mid-1990’s. I have a close friend whose husband had it in the 1970’s and their daughter got it three decades later. Yet, most medical and mental health professionals are unaware how to diagnose and treat this increasingly common disorder. PANS and PANDAS is on the rise with one child and every 150 to 200 having it.
It’s surprising that such a clearly medical condition like PANS and PANDAS remains so controversial. Unfortunately, outdated mental health systems and a lack of understanding continue to drive the unacceptable treatment many children with these disorders face.
QEEG Brain Mapping and Brain Check
At our Ridgefield, CT center, we see a clear pattern: over 80% of our OCD clients have inflammation-based OCD caused by infections and toxins.
As part of our intake process, we use QEEG brain mapping to analyze brainwave data, providing objective insights into how the brain is functioning. This process identifies four distinct brain profile phenotypes—two linked to inflammation-based OCD and two reflecting a more genetically driven anxiety and OCD profile. These insights help us craft the most effective treatment protocols, reducing the suffering for kids and their families.
It’s simple common sense: if you’re not addressing the root cause, true healing isn’t possible. That’s why QEEG brain mapping and our Brain Check are integral to the BrainBehaviorReset™ Program.
Is It PANDAS or PANS?
PANS and PANDAS are distinct disorders, but both involve the sudden onset of neuropsychiatric symptoms.
Once an infection enters the body, it triggers an overactive immune response, which can cause widespread inflammation. It's common for children to experience multiple infections and toxins that affect both the brain and body. For instance, a strep infection may initially fuel brain inflammation, but over time, other infections and toxins typically emerge as well.
The gut-brain connection plays a significant role in this process. Stress, toxins, viruses, bacteria, and even antibiotics can damage the gut. When the microbiome shifts from a balance of healthy to unhealthy bacteria, neurotransmitter function is disrupted. This imbalance further compromises the gut lining, making it harder for both the brain and body to heal.
Comprehensive lab work—looking at infections, toxins, inflammation, and nutrient levels—is a vital part in identifying whether.
Treating PANS/PANDAS and OCD?
It’s important to remember that without a calm brain, the body can’t heal. The body uses all its resources to try to “fight” the stressor, not the infection, so calming the brain is a key to healing.
(1) BrainBehaviorReset™ Program
Every day, I work with families from all over the world, many of whom are working with amazing medical providers but still not seeing the progress they need. They go through my BrainBehaviorReset™ Program which addresses that nervous system that’s stuck in a constant “revved-up” state.
This program offers a comprehensive, science-backed approach that I’ve developed over the last three decades—not just relying on neurofeedback alone. While neurofeedback is a powerful tool for calming the brain, it’s only one part of our multi-pronged approach.
In this exclusive one-on-one program, we combine neurofeedback with coaching and psychotherapy to help children learn new strategies for managing intrusive thoughts and fears, bringing real, lasting change.
(2) Exposure and Response Therapy
When it comes to treating OCD, we use the gold standard: Exposure and Response Prevention (ERP). Many therapists consider OCD resistant to treatment, but that’s often because they lack deeper training in the neuroscience behind OCD and the right treatment methods.
Cognitive behavioral therapy (CBT) alone doesn’t work for OCD without providing kids with safe opportunities for exposure. But the good news is, OCD is highly treatable with expert guidance and science-backed tools and therapies.
Psychoimmunology shows that only once the brain is calm can the body’s immune system, hormones, neurotransmitters, microbiome, and cognitive functions return to normal. That’s exactly what we focus on in our BrainBehaviorReset™ Program. I personally lead you through the process, and you’ll feel the support of an entire team as we guide you through resetting the brain and behavior—especially during what can be a very overwhelming and scary time.
Together, we’ll navigate this journey, providing the support and expertise needed to restore balance and help your child thrive.
Can strep throat cause OCD in adults?
I know this might be a surprising thought, but yes, strep throat can contribute to OCD in adults, though it’s much more commonly seen in children. In conditions like PANDAS, where a strep infection causes the immune system to attack the brain, it can trigger OCD symptoms. However, we’re still learning how this works in adults. It’s much rarer, but it’s always important to consider how infections can affect the brain, no matter the age.
Does OCD develop for everyone diagnosed with PANDAS?
Not every child with PANDAS will develop OCD, but many do. PANDAS is a bit tricky because it can cause different symptoms, depending on the child. While OCD is a major part of PANDAS, some children might experience things like tics, mood swings, or anxiety instead. The key is that the condition is brought on by an infection, and it affects the brain in unique ways. So, it’s not always a one-size-fits-all situation, but OCD is certainly one of the most common challenges.
What are the symptoms of PANDAS disorder?
PANDAS can look different for each child, but here are some of the most common signs to watch for:
- Sudden onset of obsessive-compulsive behaviors
- Tics or involuntary movements
- Extreme mood changes, like irritability or anxiety
- Intense fear of being away from parents (separation anxiety)
- Trouble sleeping, often with fears or nightmares
- Difficulty focusing, increased hyperactivity
- A noticeable drop in school performance or social struggles
It can be so overwhelming when these changes happen seemingly out of nowhere, and I know it can feel like you’re losing your child to something out of your control. But with the right support, things can get better.
Can OCD be paralyzing?
Yes, absolutely. OCD paralysis can feel like a heavy weight that stops a child (or adult) in their tracks. When obsessive thoughts take over, it can be so hard to act or even think clearly, as the need to perform certain rituals to relieve anxiety becomes all-consuming. It's like being stuck in a cycle that’s impossible to break. As a parent, it’s heartbreaking to see your child go through this. But the good news is that OCD is highly treatable. With therapies like Exposure and Response Prevention (ERP), children can learn how to face those fears and break free from the paralysis. You don’t have to go through this alone—there are solutions and a path to healing.
Why do Some Children Get PANS/PANDAS and Others Don’t?
I know it’s hard to understand why some kids recover from infections like a virus or Lyme disease while others develop conditions like PANS or PANDAS. We don’t have all the answers yet, but there’s some strong research showing that things like genetic mutations, including MTHFR, can make it harder for some kids to detoxify.
This can leave them more vulnerable to infections and toxins that go unnoticed. When these infections trigger the immune system to go into overdrive, it can cause the body to attack itself, leading to inflammation that affects the brain and nervous system.
he result is what we call a “brain on fire,” where the nervous system gets stuck in that fight, flight, or freeze state, making everything feel overwhelming. It can feel like a perfect storm, but the good news is, with the right support, there are paths to healing, and you don’t have to walk this journey alone.
Citations:
Lambert, B., Rickert Hong, M., Capanna-Hodge, R. Giustra-Kozek, J., Stone, L. (2018). Brain Under Attack: A Resource for Parents and Caregivers of Children with PANS, PANDAS and Autoimmune Encephalitis. Amazon
Jaspers-Fayer, F., Han, S., Chan, E., McKenney, K., Simpson, A., Boyle, A., Ellwyn, R., & Stewart, S. E. (2017). Prevalence of Acute-Onset Subtypes in Pediatric Obsessive-Compulsive Disorder. Journal of child and adolescent psychopharmacology, 27(4), 332–341. Mary Ann Liebert, Inc.
Marazziti, D., Mucci, F., & Fontenelle, L. F. (2018). Immune system and obsessive-compulsive disorder. Psychoneuroendocrinology, 93, 39–44. Science Direct.
National Institute of Mental Health (NIMH). PANDAS: Questions and answers. National Institute of Mental Health. Retreived on Januarary 30, 2022
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