PANDAS: A Puzzling Illness in Children

Most people take their child’s health for granted. But one mother recently learned the hard way that things can suddenly and dramatically change. It all began about a year and a half ago, when her previously healthy and energetic son Andrew suddenly came down with a severe sinus infection and flu-like symptoms right before his sixth birthday.

A Sudden Onset of Unusual Symptoms

Pam B., who asked that her last name not be used to protect her son’s privacy, says that after a few days, Andrew seemed to recover and went back to school, but it quickly became clear that he wasn’t his typical well-adjusted and energetic self. Within two weeks, he began exhibiting strange behaviors—he blinked uncontrollably; displayed head and motor tics and symptoms of obsessive-compulsive disorder (OCD); complained of severe headaches and extreme exhaustion, and even started regressing back several years in his development.

Challenges in Getting a Diagnosis

Multiple visits to four different pediatricians didn’t shed any light on this sudden and bizarre change in behavior. The doctors speculated on a range of possibilities, including allergies, a neurological disorder called Tourette Syndrome, and OCD, and wanted to put Andrew on anti-tic medication.

However, Pam and her husband resisted, believing that there had to be a logical explanation for why their son’s personality and health suddenly declined overnight. "This was a very scary and lonely time," Pam admits. "Many people didn’t understand what was happening to our son and we barely had a enough information to understand it ourselves, let alone explain it," she adds. In desperation, she began doing her own research and reached out to a local support group for parents of kids who had similar symptoms.

Learning About PANDAS

The leader of the group instantly recognized Andrew’s symptoms as coming from an illness called PANDAS, which stands for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Strep. While PANDAS isn’t well known, researchers from the National Institute of Health (NIH/NIMH) estimate that 2 percent of all school children in the United States are afflicted with this. But in fact, some experts speculate that the number could be higher since many children may never get a proper diagnosis. This is in large part because not many doctors are familiar with PANDAS, so they overlook the signs.

"PANDAS starts acutely or subacutely, meaning sudden onset over days to weeks, not months to years," explains Melanie Ann B. Alarcio, MD, who is affiliated with Phoenix Neurology and Sleep Medicine, PLLC, in Arizona, and has seen enough children with similar stories as Andrew’s to understand the scope of the illness and the serious nature it presents.

"Symptoms are both neurologic—involuntary movements, tics, to name a few—and behavioral—OCD, ADHD, anxiety, and the like—and it is autoimmune in nature. Most commonly, the inciting illness that starts the syndrome is strep infection," Alarcio says. She adds that PANDAS takes a similar course to rheumatic fever, a serious ailment affecting the heart that develops from a strep infection in the body—except that PANDAS attacks the brain instead of the heart.

Treatment for PANDAS

The description of PANDAS resonated with Pam, who realized that when her son first became ill right before all of the neurological and personality symptoms kicked in, the pediatrician had put him on a 10-day course of antibiotics for possible strep but never did an actual strep test. Pam had Andrew’s lab work done and the findings confirmed that he had extremely high levels of strep antibodies in his blood and other clinical markers for PANDAS.

The good news is that with proper treatment, children with PANDAS do recover. But Alarcio points out that no standard treatment protocol for PANDAS is in existence yet. Andrew’s personalized treatment consisted of a year of antibiotics, daily multi-vitamins, over-the-counter pain reliever as needed, and essential oils and supplements including a combination of omega 3, 6, and 9 fatty acids, probiotics, and folate. His diet was also tweaked to eliminate gluten and folic acid and reduce sugar. In addition, his tonsils, which turned out to carry an antibiotic-resistant form of strep, were removed.

On the Road to Recovery

Once all of these steps were taken, Andrew’s bubbly personality and his good health returned as quickly as they had escaped. But Pam says that some remnants of the illness do linger. While the tics are gone, he still carries some traces of his OCD, related to fear of getting sick and germs.

Could Your Child Have PANDAS?

If Andrew’s story sounds familiar and you suspect your child could be experiencing PANDAS, Pam stresses the importance of getting a proper diagnosis. Since not many doctors today are familiar with PANDAS, it can be easy for them to dismiss the symptoms as psychological in nature or not worth taking seriously, rather than believing they could stem from a medical issue. But you can be your child’s own best advocate.

What You Can Do

"You can ask your pediatrician to do a rapid strep test and, if negative, to send it for culture," Alarcio says. This second step is especially important because it is common to get a false negative on a rapid strep test, especially among children who often fidget or pull away while the doctor or nurse is collecting a sample of secretions from the throat and tonsils. To get around the problem, the US guidelines recommend following up a negative result with a microbial culture, which allows more time to see if strep will grow.

Alarcio also suggests that parents "obtain antibody titers [a test that measures the level of antibodies—your body’s response to invading organisms—in a blood sample] to strep and Epstein-Barr Virus (a type of herpes virus that causes mono), since the antibodies can cross react with strep."

In addition, she recommends asking your pediatrician for a referral to a physician who sees PANDAS on a regular basis. You find a list of experts who meet this criteria at the PANDAS Network website.

"I think it is important that before we label a child with bipolar disorder, or dismiss a child's symptoms as behavioral or a result of poor parenting (which can be true as well), that we at least evaluate them for an underlying cause," Alarcio says.

Melanie Ann B Alarcio, MD, reviewed this article.


Melanie Ann B. Alarcio, MD. Phoenix Neurology and Sleep Medicine, PLLC, email interview Aug. 31, 2014. 

Pam B., mother of child with PANDAS, phone call and email exchange, August, 2014.

"PANDAS Network." Accessed Aug. 31, 2014.