What is PANS Disease? Mothers Speak About Experience

“My child just went to bed and woke up as a different person.” -mother of a PANS/PANDAS child

Eight-year-old Tony likes to build and create all the time. This energetic kid always follows his curiosities. Apart from being bright in school, he indulges in hobbies such as playing the piano for his parents’ enjoyment. He plays with Legos imagining a perfect world where technology is used to make extraordinary things and everyone is happy. Yet once a month, Tony would get strep throat a lot. He never had a sore throat or fever, but his behavior would get strange. Tony was diagnosed to have PANS. But what is PANS disorder?

“Sometimes, I wake up feeling normal and go through my typical day. Then other times, I’m just not me,” said Tony.

Tony’s parents would see him curl up on a sofa with motor tics throughout the year. During those episodes, he exhibited anxiety and trouble focusing. He hardly sleeps and keeps on screaming. “He became a kid we didn’t know,” said his parents. 

He was filled with frustration, anger, stubbornness, and forgetfulness. Even the simplest requests set him off. Sometimes he cries for no reason and yells at his siblings. 

They sought help from a long list of professionals. Nothing worked. Medications, therapies, cognitive behavioral therapy, and IEP support at school were all failures. 

The pattern continued for years until Tony’s dad learned about PANS/PANDAS online. “This is Tony!” All of those symptoms were exactly what Tony was experiencing.

After years of struggling, Tony’s parents got in with a PANS/PANDAS specialist. And within a few weeks, the improvement was remarkable. 

“I think I have my kid back,” said Tony’s mom. 

Tony was lucky. His parents found a specialist that could help him. Unfortunately, their story is too common in our whack-a-mole mental health system. And for those with PANS or PANDAS, seeing at least 5 to 7 providers before getting help is standard. 

What is PANDAS?

PANDAS stands for Pediatric Autoimmune Neuropsychiatric Disorders (PANDAS), a group of serious illnesses in children resulting from viral infection with Streptococcus bacteria.

PANDAS is a subset of PANS. One in 200 children will have a PANS or PANDAS diagnosis. It is equally common in boys and girls, although it can happen in adults too. 

All of the following symptoms of PANDAS should be met for a clinical diagnosis:

• Presence of Obsessive-Compulsive Disorder (OCD)/ tic disorder
• Prepubertal symptom onset 
• Acute symptom onset and episodic course
• Temporal association between Group A streptococcal infection and symptom onset/exacerbations
• Association with neurological abnormalities

Sudden onset of the following mental health issues occurs in both PANS and PANDAS patients:

• rage
• OCD
• anxiety
• loss of skills such as bladder functioning
• regressive behaviors 

Elizabeth’s Story

Elizabeth Spaar is a PANS/PANDAS specialist. She became a doctor after becoming a mom to special needs kids. 

One of the kids had a rare genetic disorder. While managing her kid’s developing symptoms, Elizabeth learned about PANS from other moms —not the medical community.

Her first kids came down with PANS at the age of three. It was initially misdiagnosed. Her child cries endlessly in the car, doesn’t go to school, and doesn’t leave the house for a while. The pattern went on until Elizabeth learned about the proper diagnosis and was able to address her children’s needs as a mom and doctor. 

PANS stands for Pediatric Acute-Onset Neuropsychiatric Syndrome. This is when an infectious trigger makes the child's immune system go haywire. 

Infections such as sinus infections, allergies, pneumonia, Lyme, and environmental triggers can trigger inflammation in a child’s brain and cause debilitating symptoms. 

PANS/PANDAS is a relatively new diagnosis in the medical world. Teachers, mental health, and medical professionals have not entirely accepted it and often blame it on a psychological issue. Even some pediatricians are unfamiliar with the symptoms.  

That means getting the right help is a significant obstacle to healing. Kids and families suffer even more if we can’t recognize this medical issue properly.

Everyday life at home and school can be a challenge with the medical and behavioral components of the disorder.

Some parents face a dilemma after a diagnosis of PANS or PANDAS:

• Can he attend a birthday party?
• Do I have to homeschool him?
• How do I homeschool him while getting to work myself?
• How do I get to medical appointments?
• Should I get a second opinion?
• How can I get to the right PANS/PANDAS literate provider?
• How do I explain PANS/PANDAS to their teachers, other parents, and family members?
• How will these behaviors impact siblings?

When untreated, the condition can cause long-term issues and be traumatic for the child and family. It is scary to face this disease without a medical provider who believes in you and the right help. Parents are left to their own devices and quickly have to become Google MDs to get the care their child deserves. 

What is PANS Disorder?

PANS stands for Pediatric Acute-onset Neuropsychiatric Syndrome, a condition when an infection triggers the child's immune system to go haywire. 

PANS and PANDAS share similarities but differ in root causes. PANDAS results from strep bacteria, while PANS can result from non-infectious triggers.

Meanwhile, infections such as Lyme, Sinus Infections, Allergies, Pneumonia, and Environmental triggers result in inflammation in a child’s brain and cause the debilitating symptoms of PANS.

What are the Diagnostic Criteria for PANS Disease?

PANS manifests as an abrupt, dramatic onset of obsessive-compulsive disorder or severely restricted food intake. This occurs alongside additional neuropsychiatric symptoms with similarly severe and acute onset from at least TWO of the following seven categories:

• General and Separation Anxiety
• Emotional Lability and Depression
• Irritability, aggression, or stubbornness
• Behavioral/Developmental Regression, such as sucking fingers, baby talk, and tantrums
• Sudden Deterioration in School Performance
• Sensory or Motor Abnormalities
• Somatic signs and symptoms, including sleep disturbances, enuresis, or urinary frequency

Rea’s Story

Rea was a perfectly normal girl who excelled in school and was into writing. As an only child, she was close to her parents and dreamed of becoming an entrepreneur. 

However, when Rea was nine, she went on a camping trip and came home with pneumonia. She got well initially, but pneumonia returned several times, and she was also diagnosed with Lyme Disease. 

Rea was in a weak state for months until one day, she had an episode of tics while in school.

She has been in and out of the psychiatric hospital at ten years old. At one point, she jumped out of their home’s window. She was so out of control that her parents didn’t know what to do. 

After she almost got hit by a car, her parents decided to house her in a residential facility for safety.

Then, they saw a television interview about PANS and PANDAS and identified her with the condition. They knew that was what Rea had, and they were pretty fired up that no one had told them about PANS. 

Her parents decided to change how she was treated and start with integrative treatments that focused on calming her brain because she was so dysregulated. 

With PEMF, supplements, positive parenting, and behavioral therapy, Rea’s brain calmed down, and her behavior gradually improved. 

Why Do Doctors Miss PANS and PANDAS?

It is pretty simple, we have a pharma-driven mental health system. You must fit in the genetic or neurotransmitter problem bucket to get the “right pill.” When you find that, let me know because we have a global mental health crisis with increasing mental health prescriptions. 

Physicians and mental health providers are trained to treat symptoms and not look for root causes, toxins, and underlying infections causing the behavior and health issues. 

When patients exhibit mental health symptoms, we assume a “chemical imbalance” and recommend a pill. That is the medical model, and it isn’t working. 

PANS and PANDAS are often missed because they are psychiatric and neurocognitive symptoms that appear to be clinical mental health issues on the surface, but no one is digging deeper. Parents have to figure it out on their own after many rabbit holes.

PANS and PANDAS often occur alongside clinical conditions, making diagnosis more complex. Mental health providers and physicians don’t understand that the abrupt onset of a mental health problem isn’t normal.

OCD and PANS/PANDAS

Sudden onset OCD is one of the manifestations of PANS/PANDAS. And when it happens, it can be frightening to see compulsive behavior and intrusive thoughts hijack your child’s brain. According to the National Institute of Mental Health (2003), OCD affects 2.3% of American adults in their lifetimes.

Obsessive Compulsive Disorder (OCD) occurs when a person gets caught in a cycle of obsessions and compulsions. 

Obsessions are irrational thoughts, fears, images, or urges that trigger intense, distressing emotions. 

Compulsions are activities such as cleaning, checking, or fixating on something. Individuals engage in compulsive behaviors and rituals to address their obsessions and decrease stress and anxiety.  

Both mental and behavioral rituals take up a considerable amount of their time every day (one hour or more) and interfere with home, school, work, and relationships.  

Symptoms of OCD

 

• Cleanliness: fear contamination and repeatedly wash their hands and clean the house.
• Order: obsessed with symmetry and order, relieves anxiety by repeatedly rearranging books and cutlery, aligning carpets, pillows, and cushions
• Hoarding:  find it impossible to dispose of anything, collects old newspapers, mail, clothes, and other objects for no reason
• Counting: repeatedly count belongings and other objects, such as the number of steps on a staircase or the number of lights in a hallway. If they lose count, they start again.
• Safety: has irrational fears about safety, constantly checking whether the doors and windows are secured or whether the stove is off

There is a definite connection between OCD and PANS and PANDAS. Common behaviors are food restriction, fear of vomiting (emetophobia), contamination or germ fears, a need for excessive questioning, etc. 

Milder or more internalized symptoms, such as intrusive thoughts, are often missed or confused with anxiety. Whenever there is a sudden onset of intrusive thoughts or compulsive behaviors, PANS/PANDAS should be considered. A sudden onset of mental health problems isn’t normal.

Lito’s Story

Lito was given a watch on his sixth birthday. It was a nice watch from his favorite uncle. It was smooth and black, with a white dial and golden bezels, significantly improving from his previous power rangers watch.

Lito spent the entire weekend admiring the watch. On Monday, he went to school with a brand new watch and was staring at it his whole science class. The teacher told him to set it aside, and he started crying. That was the onset of his OCD. 

Lito experienced a frequent and recurring onset of OCD in a short period until he was diagnosed with streptococcal infections or PANDAS.

PANDAS occurs when a strep infection triggers a misdirected immune response and results in inflammation of a child’s brain. As a result, children experience life-changing symptoms such as OCD, Anxiety, tic disorders, personality changes, sensory sensitivities, restrictive eating, a decline in math and handwriting abilities, and more. 

PANDAS is a psychological condition that results from strep throat or another disorder associated with streptococcal infections. Treating both the physical and the psychological manifestations, the infection, and the inflammation is key to healing from PANDAS. 

However, even kids who have been treated may get sick again and experience some symptoms — it’s called flares. Flares result from stress, allergies, gut issues, other infections, a reactivation of the original infection, and other sources.

Lito stopped being disruptive in class, so everyone assumed he was better.

He had mild obsessions and compulsions, which everyone assumed to be a part of his personality.

However, Lito was experiencing mental contamination OCD and intrusive thought OCD. Mental contamination OCD refers to Lito’s fixations which he can pour over for hours. Intrusive thoughts OCD manifests in his fears. Intrusive thoughts would pop into his brain throughout the day. 

He also experienced a bit of checking OCD. He checks his bag five times before going to school. This means he never forgets anything, and people admire him for it.

He also experienced ordering OCD when he arranged his books. 

Lito was 16 when his OCD was diagnosed. By then, he was experiencing absent insight/delusional beliefs and was convinced that his delusional beliefs were true.

Fortunately, with treatment and therapy, Lito understood that he didn’t have to listen to his compulsions. 

How are PANS and PANDAS the Same?

PANS and PANDAS share many symptoms, even though they are two distinct disorders. Their common ground is a sudden onset of neurocognitive and neuropsychiatric symptoms.

This includes:

• ADHD
• Coordination disorder 
• Handwriting disorder 
• Learning disability
• Math disorder
• Reading disorder
• Sensory Integration Disorder
• Speech delay
• Visual perception disorder

Flares, or an uptick in symptoms, often occur when triggered by stress, diet, illness, infection, toxins, and fatigue.

Runs in the Family

PANS/PANDAS may have a genetic component. Genetic mutations such as MTHFR are risk factors that interfere with how one detoxifies. Thus, it’s common to see siblings with PANS/PANDAS.  

This severe but treatable illness occurs in kids with multiple infections, including allergies, headaches, frequent sore throats, ear infections, chemical sensitivity, urinary frequency, chronic infections, etc. 

Tucker’s Story

For Tucker and his two sisters, PANS started as a sudden onset of OCD. His parents describe what happened as a nightmare. 

Fortunately, they were able to find the right medical help and get the infections for all three kids under control.

As all three children showed similar symptoms initially, their parents had a one-size-fits-all approach to Tucker’s condition. They thought the symptoms would resolve if they addressed the lingering infections and the physical damage to his gut. 

They didn’t. Tucker still struggled with OCD. 

Tucker and his parents consulted with Dr. Roseann and the BrainBehaviorReset™ Program.

OCD occurs when the nervous system responds to a perceived or actual stressor with compulsive, obsessive, and ritualistic behaviors. One negative thought may lead to another until a person learns to stop feeding the OCD.

Tucker’s parents witnessed on a QEEG the impact of long-term compounded stress and anxiety on Tucker’s brain. 

Integrative Wellness Treatment Options

With Neurofeedback, nutrients and magnesium supplementation, cognitive behavioral therapy, parent education, and ERP therapy for OCD in an innovative program, Tucker could eliminate these OCD symptoms. 

He and his parents learned to stop “feeding the OCD” and broke free from obsessive, intrusive thoughts controlling his life. Once his brain was calm, Tucker learned to talk back to his OCD with Exposure and Response Prevention (ERP) therapy. Tucker was back, and his family was feeling happy for the first time in a long time.

How Can Neurofeedback Help PANS and PANDAS?

Neurofeedback is a technology that helps the brain regulate so it can better manage a person’s thoughts and behaviors. 

Based on operant conditioning, the brain receives reinforcing feedback and learns to self-regulate brain waves so a person can focus, stay calm, and process more quickly.

After an assessment with Dr. Roseann, she curates a protocol to address dysregulated PANS/PANDAS brain states.

A session involves computers providing visual and auditory feedback to the subconscious brain whenever it gets into a healthy rhythm.

Over time, the brain stays in that optimal, regulated state.

Neurofeedback also influences neurotransmitter activity and calms the nervous system, so a child can slow down enough to learn new ways of responding. 

Neurofeedback is a powerful technology that helps address rage, rigidity, and emotional and behavioral reactivity. That means emotional wellness and stability for the child and family. Remember, no learning can occur with a stress-activated brain. It needs to be calm for one to adopt new behaviors.

Common PANS/PANDAS Issues that Dr. Roseann Addresses with Neurofeedback

 

 

Neurofeedback has thousands of research studies that show just how effective Neurofeedback can be in treating various conditions and issues. With PANS and PANDAS, Neurofeedback can be used to treat the following problems: 

• Agitation 
• Anxiety
• Attention 
• Brain fog
• Bedwetting
• Chronic Pain 
• Eating disorder
• Executive functioning
• Impulse control
• Learning, memory, and processing
• Mood swings and emotional lability
• Obsessions and compulsions
• Rage and anger
• Separation anxiety
• Sleep disturbance
• Tics
• Withdrawn behaviors

In addressing PANS and PANDAS, parents and providers must take a multi-pronged approach with care and psychoeducation. Neurofeedback is a powerful science-backed method to calm the brain so the body can heal. It works synergistically with other tools and therapies.

Parent Action Steps 

☐Gain insights about PANS and PANDAS from experts and mothers who experienced it
☐Educate yourself about PANS symptoms and triggers
☐Consult a healthcare professional  
☐ Explore available treatment options with your child's doctor
☐Connect with support groups to share experiences and advice
☐ Download Dr. Roseann’s PANS and PANDAS Diagnosis Checklist
☐ Take our Solutions Matcher to get personalized advice for your child

Citations:

National Institute of Mental Health. (2003). NIMH» Obsessive-Compulsive Disorder (OCD). Www.nimh.nih.gov. https://www.nimh.nih.gov/health/statistics/obsessive-compulsive-disorder-ocd

NHS (2022), Symptoms – Obsessive-compulsive disorder (OCD) https://www.nhs.uk/mental-health/conditions/obsessive-compulsive-disorder-ocd/symptoms

TEDxCarrollCollege (2022), My experiences with OCD and PANDAS
White Swan Foundation (2022), Obsessive Compulsive Disorder (OCD) https://www.whiteswanfoundation.org/disorders/anxiety-and-related-disorders/obsessive-compulsive-disorder-ocd

WQED Pittsburgh (2019), A Childhood Mystery: PANDAS and PANS Disorder