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March 19, 2015

Advocating for your child when doctors doubt the diagnosis

Care for patients with PANDAS, a little-known controversial disorder, is limited in tri-state area

Wellness Parenting
sad child File Art/for PhillyVoice

Children with PANDAS often experience life-changing OCD symptoms and anxiety almost overnight.

When Deanna Nichols' 4-year-old son had a series of strep infections, one so bad it morphed into scarlet fever, he had his tonsils removed. About a week after the surgery, her son began experiencing some separation anxiety and behavioral changes; concerned about the shift, Nichols took him to see a psychiatrist near her home in Florida. He was given medication but, after a few weeks of treatment, her son's mild anxiety turned much, much worse. 

Suddenly, he began exhibiting extreme behavioral changes like aggression and Obsessive Compulsive Disorder. After researching a syndrome she had heard about in her work as a nurse, Nichols believed her son might have PANDAS, or Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. 

However, no one could say for sure what had caused this onset of symptoms, so Nichols' son was admitted to an inpatient pediatric psychiatric facility. 

PANDAS children experience acute-onset OCD along with other neuropsychiatric symptoms, set off by a streptococcal-A (GABHS) infection immediately prior to those symptoms. This is caused by a misdirected autoimmune response to strep that attacks tissues in the brain.

Nichols requested her son be tested for a strep infection, and on his last day at the facility, he tested positive. Despite what seemed like a correlation between her son's infections and his extreme behavioral change, the doctors treating Nichols' son remained unsure that PANDAS was its cause.

Nichols' experience is not uncommon. Many doctors are either unfamiliar with the syndrome or are reluctant to recognize it as a legitimate syndrome due to its relatively recent entrance into the medical lexicon. Though doctors at the National Institute of Mental Health began investigating connections between acute-onset OCD in children and various infections in the early 1990s, the first paper on PANDAS was not written until 1998. 

Only in 2010 did researchers and physicians meet at the National Institutes of Health to clarify the definition of PANDAS. Its definition was altered to fall under the umbrella of PANS, or Pediatric Acute-onset Neuropsychiatric Syndrome. 

It was also clarified that PANDAS can only be diagnosed through a detailed history showing sudden onset of symptoms and a physical exam to rule out illnesses like rheumatic fever, which results from untreated strep, and Sydenham chorea, its neurological counterpart. Essentially, there's no single test to diagnose PANDAS.

Since there is no conclusive test that connects the presence of strep to OCD, vocal detractors like Dr. Roger Kurlan compare PANDAS diagnoses to the false correlation between vaccinations and autismComplicating matters further, strep infection is a common childhood occurrence, and some may carry the bacteria without showing signs of illness. This means children may begin to exhibit PANDAS symptoms weeks after they "had strep." Others may stop showing signs of illness when treated with antibiotics, though the bacteria remains.

Thus, doctors were hesitant to diagnose Nichols' son. 

"They were very apprehensive about even believing in the diagnosis. It’s not something they were even going to entertain," she said.

Nichols then came across a special edition of the Journal of Child and Adolescent Psychopharmacology dedicated to PANDAS/PANS research. The journal was written by a group of researchers and physicians, including PANDAS pioneer Dr. Susan Swedo and Dr. Kiki Chang, director of Stanford's Pediatric Biopolar Disorders and PANS Research Programs. 

"I made like 10 copies of that JCAP," Nichols said. "I copied it and I handed it to everybody - the ER doctors, the anesthesiologist, the hospitalist, the neurologist, infectious disease, residents. I handed it out to everybody, and once they began to read it, and seeing my kid's symptoms and seeing their relation to every single one of the symptoms of PANDAS syndrome, I think that they kind of realized that ... he fit every one perfectly."

Diana Pohlman, executive director of an online information hub called PANDAS Network, hopes more parents download the journal.

"This journal is like their key to happiness," Pohlman said.

Many parents who have trouble finding PANDAS treatment in their region "drain their bank accounts and they fly to Stanford or they fly to Georgetown or they fly to Chicago" to see experts, she said. Rather than traveling long distances to visit specialists, Pohlman hopes parents who print out the JCAP and present it to their local practitioners will raise awareness and thus find treatment closer to home. 

Unfortunately, according to Pohlman, finding PANDAS treatment in the tri-state area of Pennsylvania, New Jersey and New York is notoriously difficult. Dr. Rosario Trifiletti, a child neurologist in Ramsey, New Jersey, who specializes in PANDAS, agreed, saying he regularly fields patients from our area. 

"I’m getting a lot of patients that have to drive two hours to see me up in North Jersey," he said, citing cases from Philadelphia, Trenton, Camden and South Jersey. 

A representative for the Children's Hospital of Philadelphia, widely regarded as a top-tier institution, said they did not have anyone available to speak on the topic of PANDAS and did not respond for comment when asked whether they even treat PANDAS/PANS.

At a hospital an hour and a half away from her home, Nichols and her son were able to make some progress. 

"I was able to kind of talk them into treating him for it. It actually worked out well," she said. 

Parents should look to Nichols' example when struggling to find treatment in our area, especially since the eradication of an active or occult strep infection with antibiotics can relieve PANDAS symptoms in many patients. 

Trifiletti advises parents who think their children may have PANDAS to follow their instincts.

"If they don’t really believe what the pediatrician is saying, be skeptical and use the Internet and get other opinions from parents who have similar symptoms," he said. 

After her experience, Nichols agrees. 

"[Parents] have to advocate for their children, because if we as parents don't, no one else will, and advocating for your child, standing up for your child, pushing for the right diagnosis and treatment for your child doesn't make you a nuisance. It makes you a good and loving parent," she said.