The Challenge of PANS and PANDAS

OVERCOMING IGNORANCE, EXPLORING POSSIBLE TREATMENTS

BY KARA JOLLIFF GOULD, PH.D.

The acronyms PANS (Pediatric Acute-onset Neuropsychiatric Syndrome) and its subset PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) are relatively new terms that refer to auto-immune responses in which antibodies attack a child's brain. These attacks are believed to be a response to strep tococcus, Lyme, influenza or other infections. According to researchers with Stanford University's PANS program, symptoms can include sudden onset obsessive-compulsive disorder (OCD), tics, anxiety, irritability, mood swings, hyperactivity and urinary problems. Declines in cognitive and motor skills can also occur.

For parents of children and young adults diagnosed with PANS or PANDAS, everyday life can be difficult to manage. Children who are happy, healthy and functional one day can become too terrified to eat, sleep or play – often overnight. These children can become unable to engage in many of their daily activities due to sudden-onset symptoms of obsessive-compulsive disorder (OCD) or tics. They may express their frustration in a variety of ways – through disruptive behavior, withdrawal, crying or even suicidal thoughts and actions.

Parents struggle to care for these extremely distressed children. One mother writes that following a diagnosis of PANS/PANDAS, "you come to the realization that your child is gone." The anxiety can be so all-consuming that the child's personality seems drastically altered.

But, just as challenging as daily care is the search for doctors familiar with the syndrome who recognize it as a legitimate disease and know how to treat it effectively. This challenge is complicated by two factors: a general unfamiliarity with PANS and tors: a general unfamiliarity with PANS and PANDAS among both physicians and the public, and the lack of physician training in treating the condition. At least one in 200 U.S. children are affects by PANS and PANDAS, according to PANDAS Network, a nonprofit advocacy group. Because these children present symptoms that are similar to those associated with mental illness, many pediatricians simply refer them to child psychiatrists. Others have taken an interest in learning more about PANS and PANDAS after encountering severe symp toms in children and questions from parents. But few are experts in treating the condition, and some still insist that PANS and PANDAS are not conditions distinct from childhood OCD and tics, despite research studies that show the effectiveness of treatments. This skepticism has contributed to some children struggling with symptoms for years. Yet, a study published in the Journal of Immunology confirms the effectiveness of intravenous immunoglobulin (IVIG) treatments in reducing the antibody levels that indicate auto-immune dysfunction. The establishment of the Stanford University PANS clinic has also lent further credibility to the existence of the condition and current research findings.

Newly identified medical conditions or PANDAS NETWORK pandasnetwork.org/us-providers PANDAS PHYSICIAN NETWORK PRACTITIONER DIRECTORY pandasppn.org/practitioners syndromes are often met with skepticism, since it takes time for research studies to be conducted and new diseases defined and confirmed. PANDAS was first identified by pediatrician Dr. Susan Swedo and colleagues in 1998. In the early 2000s, a few doctors of various backgrounds and specialties took up the challenge of treating and raising awareness of the syndrome, which requires treatments that differ from those of conventional mental illness. The pioneers, including Swedo (now of the National Institutes for Mental Health), have developed a variety of treatments for children who present symptoms of PANS and PANDAS including steroids, antibiotics and IVIG treatment in an effort to relieve their suffering.

But the variety of specialties these docTHE HEARTWOOD PROGRAM FOR PANS/PANDAS pandas.theheartwoodprogram.com tors represent can present a dizzying array of options for parents. Each seems to offer a somewhat different approach to treating PANS and PANDAS, and while many research studies support the effectiveness of some treatments, others offer treatments too new to have undergone research trials.

Parents who are desperate to try anything to help their child are left with a myriad of paths to consider. Which type of doctor should be consulted first, and which treatments should be considered? Steroids? Antibiotics? IVIG? Homeopathic remedies? Tonsillectomies and adenoidectomies are recommended to help some children. Traditional anxiety medications (SSRIs) have helped other children, often in combination with other treatments. The array of options, none of which is guaranteed to help, can be overwhelming. A parent explains, "Once your child has this diagno sis, life is never the same again; everything you knew about health, mental and emotional well-being, diet, and medicine in general – it all goes out the window."

The variety of medical specialists currently treating PANS and PANDAS include: 

Some chiropractors and homeopathic physicians also offer treatment options. Treatments for PANS and PANDAS, such as IVIG, can cost thousands of dollars, as author and researcher Patricia Rice Doran of Towson University notes. Only five states mandate insurance coverage for PANS and/or PANDAS: Connecticut, Delaware, Illinois, Minnesota and New Hampshire.

Because the infections triggering the autoimmune response that attacks the brain vary, as do severity of symptoms, there is no "gold standard" of care. This presents a particular challenge for parents. A few doctors have formed informal networks in which they refer children to other specialists, but many such specialists do not accept health insurance, even in states where coverage is required. There is no current medical code in the International Classification of Diseases (ICD) for PANS or PANDAS; codes for both are not scheduled to be added until 2022, according to the World Health Organization (WHO). Physicians who work with insurance companies typically use codes that are compatible with their various specialties (psychiatrists can use anxi ety or OCD coding, for example, and immunologists and neurologists can use codes related to immune disorders such as autoimmune encephalopathy.)

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FULLY FUNCTIONAL: Without proper treatment, some children suffering from PANS and PANDAS are unable to function independently as they become young adults, but when met with proper medical care many children with PANDAS and/or PANS grow into young adults who are symptom-free.

So how can exhausted parents find good treatment options? Some families choose care at one of the handful of PANS or PANDAS clinics that bring together several specialists into one practice to treat children with these conditions. While some such multidisciplinary clinics, such as the Stanford PANS Clinic, require that patients live nearby, others, such as the PANS Clinic at the American Family Children's Hospital in Madison, WI, and the Children's Postinfectious Autoimmune Encephalopathy (CAPE) clinic in Tucson, AZ accept patients from around the U.S. and the world.

Because children with PANS and PANDAS suffer such great distress and debilitating symptoms, the Journal of Pediatric Psychology reports that the stress families endure when caring for them is comparable to the caregiver stress associated Alzheimer's disease. Others, such as Susan Swedo, liken the experience to dealing with childhood cancer. Parents need to know that they are not alone, and that help is available. One parent describes her experience of caring for a daughter with PANS:

"Life goals and priorities change and everything centers around getting the child back to functioning in life. At the same time, you are mourning the loss of all things familiar and the child you once knew. Unlike when somebody dies, this is a continually relived grief…because just when you think you've reached a new plateau of well-being, your child can back slide. So, we live with constant PTSD and fear of what tomorrow may bring."

Without proper treatment, some children suffering from PANS and PANDAS are unable to function independently as they become young adults, and a small percentage suffer irreversible cognitive damage. But when met with proper medical care, many children with PANDAS and/or PANS grow into young adults who are symptom-free.

Educating parents, teachers and pediatricians to recognize the signs and symptoms of PANS and PANDAS can help increase accurate diagnoses and bring about more awareness of the treatments that are available to help these children and their families. •

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SEARCHING FOR SUPPORT : PANS AND PANDAS RESORCES

There are several reputable advocacy organizations that operate websites with directories of physicians in the U.S. who treat PANS and PANDAS, often organized by state. While not comprehensive, they are a useful place to start. These websites offer other helpful resources for patients and their families as well. The most reputable include:

AUTHOR BETH ALISON MALONEY bethalisonmaloney.com/pandaspans/support-groups-providers/wpbdp_category/providers

PANDAS NETWORK pandasnetwork.org/us-providers

PANDAS PHYSICIAN NETWORK PRACTITIONER DIRECTORY pandasppn.org/practitioners

THE HEARTWOOD PROGRAM FOR PANS/PANDAS pandas.theheartwoodprogram.com

HITTING THE ROAD : PANS AND PANDAS, TRAVEL AND COVID-19

The COVID-19 pandemic presents a significant challenge to any traveler. PANDAS and PANS definitely add complexity to the situation. Many children with PANS and PANDAS have suffered from germ-related OCD before the COVID-19 crisis began, and the crisis undoubtedly makes some people's OCD worse. Some children with this condition may appreciate that other people are now expressing concern over handwashing and staying healthy, however, and find the efforts of others somewhat comforting. Regardless of how your child reacts, here are some tips that may help:

Finally, keep in mind that exposure to other people with viral and bacterial infections can cause symptom "flares" in some children — even if they don't contract the particular disease to which they've been exposed. For those kids, travel outside your local area may not be advisable, unless your destination has a lower rate of illness.

(Note: these tips are not meant to serve as medical advice — always consult your physician before traveling with an ill child. Also, it is important to review the directives of local authorities in both your home and destination areas, as well as the Center for Disease Control (CDC) and/or the World Health Organization (WHO) when considering any travel away from your home region during a pandemic.)

ABOUT THE AUTHOR:

Kara Jolliff Gould, Ph.D., is Assistant Professor of Journalism and Director of Undergraduate Studies at the School of Journalism and Strategic Media at the University of Arkansas. Previously, she taught for more than 20 years at colleges such as Weber State, John Brown University and Pepperdine. She has worked professionally in media in Chicago and Salt Lake City and has published scholarly work in The Journal of Media Education, The Southern Communication Journal, and The Journal of Broadcasting and Electronic Media. She is acquainted with the needs of students with disabilities both as a professor and as a parent.