Local family promotes P.A.N.D.A.S awareness

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By Rebekah Martin

Assistant Editor

Jared Key loved to meet new people. He was a social butterfly and a friend to everyone he met. “At only 7 years old, his quirky and vibrant personality had won him his nickname, Dr. Love,” said Jared’s mother, Michelle Key. “The room would light up when Jared walked in.”

Everything changed for Jared during the winter of 2006 when he developed P.A.N.D.A.S., which stands for Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus.

Jared woke up one morning a changed person. He was afraid to get out of the car at the school that he loved. A naturally vivacious and fun-loving child, Jared cowered in the floorboard, trying to hide from the aide that had opened the car door. Michelle was immediately concerned after witnessing such a drastic change in behavior. For months, doctors dismissed the problem and offered no explanation as to why the young boy continued to withdraw from social activities and develop anxiety issues. Specialists blamed Jared’s existing medical problems, which included a rare chromosomal abnormality, for the development of high anxiety, erratic changes in his sleeping patterns and debilitating panic attacks.

Jared’s doctors prescribed a plethora of medications, none of which eased his symptoms. Jared’s parents, Bill and Michelle, resorted to the unconventional treatments of a gluten and dairy free diet as well as dietary supplements to help Jared sleep. These biomedical interventions offered some relief but left the mystery of his disease unsolved.

Finally in 2011, while being treated for a common infection with a round of antibiotics, Jared had an abrupt and drastic improvement of his symptoms. A second round of antibiotics showed the same reduction in symptoms. It was this discovery, paired with an extensive review of Jared’s medical history, that led to a clinical diagnosis of P.A.N.D.A.S.

The disease, while mostly diagnosed in children, can strike anyone at any age under the right set of circumstances. The disease that had been the culprit behind Jared’s years of issues now had a name. P.A.N.D.A.S. is a rarely diagnosed autoimmune condition that causes a person’s immune system to produce antibodies meant to attack bacteria but mistakenly target healthy cells in the brain, causing inflammation.  This attack on the human brain can cause symptoms that mimic psychiatric illnesses.

Symptoms of P.A.N.D.A.S. include: obsessive-compulsion behaviors that can lead to a diagnosis of Obsessive Compulsive Disorder (OCD), sensory sensitivities, verbal or motor tics, abnormal movements, age regression, separation anxiety, irrational fears, urinary frequency or bed wetting, irritability, aggression, deterioration of handwriting and/or math skills, inability to concentrate, ADHD-like symptoms, personality changes or drastic changes in sleeping patterns.

P.A.N.D.A.S. has gained national attention due in part to a number of people advocating for its recognition. Author of the books “Saving Sammy” and “Childhood Interrupted,” Beth Alison Maloney became such an advocate after watching her son, Sammy, suffer with the disease that was misdiagnosed as autism. “The tragedy of failing to recognize this disorder is that hundreds of thousands of children are routinely doomed to a lifetime of mental illness and psych drugs when all they may need to fully recover is an extended course of antibiotics,” said Maloney. “Public awareness could be the key to bringing down the high rate of misdiagnoses related to P.A.N.D.A.S.”

The medical profession and the general public are becoming more aware of the disease. Conferences about P.A.N.D.A.S. awareness are held in several cities across the United States in an effort to increase awareness and to aid families who are struggling with it. About 50 percent of the states in the U.S. have issued proclamations declaring Oct. 9 as P.A.N.D.A.S. Awareness Day.

According to www.nih.gov, the National Institute of Health is conducting clinical studies on various treatments. For now, the general consensus is that effectively treating inflammation and preventing recurring infections that prompt the production of the antibodies is the first line of defense.

In the years since Jared’s diagnosis, his parents have attended medical conferences with the nation’s leading experts in an effort to learn more about P.A.N.D.A.S. One such expert, Dr. Rosario Trifiletti, has treated over 3,000 children with P.A.N.D.A.S. and is actively researching the illness. “Anything that can give you a fever, in the right genetic and immune setting, can give you P.A.N.D.A.S.,” said Trifiletti. “The problem is it can recur if you’re prone to having this kind of infection.”

For most children that develop P.A.N.D.A.S. following an illness, treatment can be successful, and the child can fully recover. However, according to Trifiletti, in cases where the disease has gone untreated long enough, it can cause irreparable damage to the brain and permanently change its neurochemistry.

Trifiletti contends that “there is probably one P.A.N.D.A.S. kid in every kindergarten class.” As with other autoimmune disorders, early diagnosis of P.A.N.D.A.S. and intervention is crucial.

For more information and resources about P.A.N.D.A.S., visit www.pandasnetwork.org or www.strepmonster.com.

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