What is PANDAS?

For the first 4 years of his life, Eric was a fun-loving kid who loved to play catch with his dad and build things with his Legos. When Eric turned 5, though, something changed. All of a sudden, he would fly into a rage, smashing his Legos and throwing his toys at his dad. The young boy also developed a strange tic—jerking his head to one side and shrugging his shoulders. His parents were at a loss. What had happened to their sweet little boy? They took Eric to a psychiatrist, which led to a long journey and a laundry list of diagnoses—ADD/ADHD, oppositional defiant disorder (ODD), obsessive compulsive disorder (OCD), and more. By the time they brought Eric to Amen Clinics, the boy had been to 6 different doctors and was taking multiple medications. But they weren’t working. After a full evaluation at Amen Clinics, which includes brain SPECT imaging, lab work, and neuropsychological assessments, a different diagnosis emerged—PANDAS (pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections), which is considered a subset of PANS (pediatric acute-onset neuropsychiatric syndrome). Still considered controversial in traditional medicine, PANS/PANDAS are very real conditions linked to infections that lead to harmful changes in the brain. Controversial in traditional medicine, PANS/PANDAS are real conditions linked to infections that cause harmful brain changes.

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“This is not likely going to be on the radar screen of most mental health doctors and yet it’s a huge problem for the person with it because they’re likely to be misdiagnosed, drugged, or even hospitalized,” says physician Marc Filidei, DO, Director of Integrative Medicine at Amen Clinics.

THE BASICS ABOUT PANS/PANDAS

PANS/PANDAS, which affects an estimated 10% of children diagnosed with OCD or Tourette’s syndrome, is believed to occur when an infection triggers a misdirected immune response that results in inflammation of a child’s brain. In the early days of research on this condition, experts focused specifically on strep infections as a trigger that attacked areas in the front part of the brain. Now, scientists have broadened their investigations and found that many different types of infections may attack the brain and lead to a variety of neuropsychiatric problems. Some of the bacterial or viral infections associated with PANS/PANDAS include:

• Strep
• Lyme disease
• Mycoplasma pneumoniae (walking pneumonia)
• Mononucleosis
• Epstein Barr virus

These infections are believed to cross the blood-brain barrier to attack brain tissue. Neuroimaging studies show that PANS/PANDAS tends to impact the basal ganglia of the brain. These large structures deep in the brain are involved in habit formation. According to Dr. Filidei, “If your body is attacking your brain, you can have dramatic problems.” In a video on PANDAS and PANS with Dr. Filidei, he adds, “Personally, I think this goes far beyond kids with OCD. I think there’s a very high likelihood that this same process is going on with a lot of mental health conditions.” In the young boy Eric’s case, his sudden behavioral changes stemmed from a strep infection when he was 5 years old.

COMMON SYMPTOMS OF PANS AND PANDAS

The hallmark trait for PANS/PANDAS is sudden acute and the debilitating onset of neuropsychiatric symptoms. These life-changing issues may include:

• OCD
• Restrictive eating
• Intense anxiety, panic attacks, or new phobias
• Inattention and/or hyperactivity (often seen in ADD/ADHD)
• Vocal or motor tics
• Depression and/or suicidal thoughts and behaviors
• Aggression or anger
• Oppositional behavior
• Sensory sensitivities
• Behavioral regression
• Decline in math and handwriting abilities
• Sleep disturbances
• Bedwetting
• Symptoms associated with autism
• Psychosis
• Decline in school performance

These acute and severe emotional and behavioral changes often don’t go away. They are not temporary. They can stick around.

COVID-19 AND PANS/PANDAS

Although researchers have documented an increased risk of neuropsychiatric disorders related to COVID-19, they are still investigating the virus’ relationship with PANS/PANDAS. A 2021 survey of 670 PANS/PANDAS families attempted to gain a greater understanding of how the pandemic and lockdowns were affecting those with the condition. According to the findings, the percentage of those experiencing increases in the following symptoms were as follows:

• General anxiety (50%)
• OCD (35%)
• Depression (28%)
• Trouble with sleep (26%)
• Erratic sleep (24%)
• Issues with eating (24%)
• Phobias and fears (21%)
• Tics (18% overall)
• Motor tics (10%)
• Vocal tics (5%)

Emerging research is looking into the possibility that infection with COVID may trigger the onset of PANS. For example, a 2021 study in The Lancet featured case studies of 2 children with PANS whose symptoms started within a few weeks of testing positive for COVID. One of the cases was a 12-year-old boy who developed a compulsion to wash his hands excessively, facial tics, and fears about coming into contact with handles, among other symptoms. The other boy, 13, was diagnosed with COVID and subsequently developed facial and vocal tics, compulsions, hyperactivity, aggressiveness, a lack of appetite, attention problems, and irritability.

DIAGNOSTIC TESTS FOR PANS/PANDAS

When diagnosing these conditions, functional brain SPECT imaging, as well as labwork, can be invaluable. On SPECT scans, overall decreased blood flow or a pattern called scalloping are signs of a potential infection. Seeing these patterns on brain scans prompts Amen Clinics physicians to investigate further to determine if underlying infections may be the root cause of a child’s condition. In this case, blood tests for common viral and bacterial infections can be very helpful.

CAN PANS/PANDAS BE TREATED?

The good news is there are treatments that can be effective for PANS/PANDAS. Getting a proper diagnosis is the key to finding the right treatment plan. Treating the underlying infection is a critical step in the process. Other treatment methods include plasmapheresis and intravenous immunoglobulin (IVIG), which were shown to be effective in the treatment of PANDAS in a 2015 study in the Journal of Child and Adolescent Psychopharmacology. Natural therapies may include changes in diet, reducing exposure to environmental toxins, and learning stress-management techniques. For Eric, treating the infections, improving his diet and gut health, and other treatment strategies were beneficial and helped him return to being the kind, loving youngster his parents knew he could be. The sudden acute onset of neuropsychiatric issues like OCD, anxiety, or aggression can’t wait. At Amen Clinics, we’re here for you. We offer in-clinic brain scanning and appointments, as well as mental telehealth, clinical evaluations, and therapy for adults, teens, children, and couples. Find out more by speaking to a specialist today at 888-288-9834 or visit our contact page here.