Friday, May 28 & Saturday, May 29
PANDAS Track
(For full descriptions, please see bio/abstract pages; for rooms, see schedule pages.)
Friday 1:45 Drs. Susan Swedo & Madeleine Cunningham
Friday 3:00 Dr. Rosario Trifiletti
Friday 4:00 Dr. M. Elizabeth Latimer & Laura Matheos
Friday 5:00 Dr. Denis Bouboulis & Lynn Johnson
Saturday 4:00 Beth Alison Maloney
Madeleine Cunningham, PhD
is a George Lynn Cross Research Professor, Department of Microbiology and Immunology, University of Oklahoma College of Medicine. Her research has focused on molecular mimicry, autoimmunity and infection. A focus of her laboratory includes the study of autoimmunity and behavior which is manifest in diseases such as Sydenham's chorea following group A streptococcal infection. Study identified antibody mediated neuronal cell signaling as the basis for the choreic movement disorder. Other related movement and psychiatric disorders such as obsessive compulsive disorder, Tourette's Syndrome and Tics are under investigation for subsets that may be related to streptococcal infection and/or to autoantibodies which signal in the brain. Dr. Cunningham's teaching focuses include microbial pathogenesis and immunology, host-parasite interactions, and bacterial pathogenesis, and medical and dental microbiology.
Susan Swedo, MD
is a researcher in the field of pediatrics and neuropsychiatry, and since 1998 has been Chief of the Pediatrics & Developmental Neuroscience Branch at the US National Institute of Mental Health. In 1994, Swedo was lead author on a paper describing Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections (PANDAS), proposing a link between Group A streptococcal infection in children and some rapid-onset cases of obsessive-compulsive disorder (OCD) or tic disorders such as Tourette syndrome.
Autoimmunity and Behavior: Sydenham Chorea, PANDAS and Related Disorders
Sydenham chorea is the major neurologic sequelae of group A streptococcal-induced acute rheumatic fever (ARF) and is most likely due to autoimmunity and molecular mimicry between host and pathogen. Pediatric Autoimmune Neurologic Disorder Associated with Streptococci (PANDAS) has also been suggested to be a sequelae of streptococcal infections. Human anti-streptococcal monoclonal antibodies(mAb) derived from Sydenham chorea targeted caudate putamen tissue as well as brain antigens lysoganglioside and tubulin. The chorea derived mAbs, acute Sydenham chorea sera and cerebrospinal fluid targeted human neuronal cells and signaled calcium-calmodulin dependent protein (CaM) kinase II activity and dopamine release in a neuronal cell line as well as in primary neuronal cells. New preliminary data suggest that dopamine D1 and D2 receptors may be targeted by the crossreactive anti-brain mAbs and sera. Serum antibodies from related disorders such as PANDAS with obsessive compulsive behaviors, vocal tics or tic-like movements demonstrated that the level of the CaM kinase II activity was increased along with antibodies against lysoganglioside and a number of neuronal antigens. Comparison of matched acute and convalescent PANDAS sera taken before and during the exacerbation demonstrated an elevation in CaM kinase II activity associated with disease. Study of an animal model of Sydenham chorea revealed that immunization with group A streptococcal antigen led to behavioral changes which correlated with antibody deposition in the striatum as well as reactivity of serum IgG with dopamine receptors and the induction of CaM kinase II activity. These data are consistent with the current hypothesis that central dopamine pathways may be involved in Sydenham chorea which is treated with haloperidol, a D2 receptor antagonist.
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Rosario Trifiletti, MD received his degrees from the Johns Hopkins School of Medicine, with a PhD in neuropharmacology. After completing his training at Babies Hospital and the Neurological Institute of New York at Columbia-Presbyterian Medical Center, he was an assistant professor at Columbia and then Cornell Medical School. Subsequently, he was chief of child neurology at St. Vincent’s (Manhattan) and UMNDJNewark. He is currently in private practice in Ramsey, NJ (www.neurokidsr.us).
PANDAS and Related Illnesses: No Longer Black and White
PANDAS refers to the acute onset of tics and/or obsessive-compulsive symptoms in temporal correlation with a group A strep infection. However, PANDAS is but one of a larger group of post-infectious neuropsychiatric disorders known by the acronym PITANDS.
Dr. Trifiletti will draw on his 15 years of experience treating almost 1000 cases of PITANDS to survey how complex things have become. He will discuss the range of possible infectious triggers that can produce PITANDS, which include not only GABHS but also Mycoplasma pneumoniae infection and Lyme-like illness, especially an antiflagellin (p41) syndrome. He will also discuss why the range of clinical manifestations of PITANDS should be expanded to include symptoms beyond tics and OCD. This will be illustrated by four case histories: 1) a child with acute onset of tics following a streptococcal infection; 2) a child with acute onset of intractable sneezing following a Mycoplasma pneumoniae infection; 3) a child with an autistic spectrum disorder who undergoes sudden behavioral and language regression following a streptococcal infection (PDD-PANDAS); and 4) a hyperacute acute onset of ballistic tics, falsetto vocal change and episodic rage following severe streptococcal infection suggestive of demonic possession (“Exorcist syndrome”). All of these patients improved rapidly with the clinically appropriate antibiotics alone. PITANDS is thus seen to be a condition with a broad range of triggers and clinical manifestations that should be considered in the differential diagnosis of many acute and chronic neuropsychiatric conditions in children.
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M. Elizabeth Latimer, MD received her medical degree at Tufts University School of Medicine in Boston. Her residencies were in pediatrics and neurology with special certification in child neurology at Walter Reed Army Medical Center. She was chief of the Child Neurology Division at Georgetown University Hospital for five years and then worked at Fairfax Hospital before opening her own private practice of neurology in Bethesda. Dr. Latimer specializes in caring for cerebral palsy patients who require spasticity management, in addition to her general neurology and headache practice. She has been cited in the Washingtonian Magazine as an outstanding neurologist.
Laura Matheos has a BA in Communications from Wake Forest University and an MBA from the University of North Carolina at Chapel Hill. She and her husband are raising two young children and advocate for families struggling to find medical support for the treatment of PANDAS.
PANDAS – A Clinical View and Treatment Options
Dr. Latimer will speak about her clinical experiences in treating PANDAS patients. She will discuss the factors she considers in making a diagnosis, the common presentations of the disease, and which treatments have proven effective for her patients. Copresenter Laura Matheos will speak about her family’s experiences in finding a PANDAS diagnosis for their son, the family’s frustrations in fighting a skeptical medical community, and her son’s treatment progress. She will also speak about current resources available to families.
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Denis Bouboulis, MD, is a board certified physician licensed in Connecticut, New York, and Pennsylvania. Dr. Bouboulis has been chosen as top physician of the year for the past 3 years by “Connecticut’s Top Physicians” and “Top Physician of the Year, 2007” by “America’s Top Physicians.” Dr. Bouboulis specializes in the treatment of allergies, asthma, and immunology in children and adults. He is also dedicated to providing the finest healthcare for children suffering from PANDAS. Please see www.advancedallergy. com and www.pandasresourcenetwork.org.
Lynn Johnson is the executive director of the PANDAS Resource Network.
www.pandasresourcenetwork.org.
The immunological role of PANDAS
Dr. Denis Bouboulis will talk about the importance of diagnosing cryptic Strep, diagnosing Strep in the whole family, and erradicating Strep from the whole family. He will also discuss how the immune system is affected by PANDAS. Lynn Johnson will talk about the parent side of the journey, finding a doctor, and treating the whole family for maximum success.
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Beth Alison Maloney is the author of SAVING SAMMY: Curing the Boy Who Caught OCD. SAVING SAMMY is the first book ever published about Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS). The book propelled the disorder to national attention beginning with an appearance by Ms. Maloney with her son Sammy on the Today Show in September 2009. She was then instrumental in forming the PANDAS Foundation, for which she serves as 51 the national spokesperson. Ms. Maloney, an attorney, resides in Maine. In addition to representing writers and producers, her law practice has focused on representing the best interests of children as their Court appointed guardian ad litem, primarily in cases of neglect and abuse. Ms. Maloney is the mother of three sons, and Sammy is her middle child. He has been fully recovered and symptom-free for more than 5 years. www.savingsammy.net
Saving Sammy – Curing My Son’s OCD and Tourette’s with Long-term Antibiotic
Treatment for PANDAS
Ms. Maloney will offer an overview of PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) with an explanation of how it causes mental disorders. She will review how and why strep has been overlooked throughout the years. Ms. Maloney will review her son Sammy’s history. She will cover what it took to get the correct diagnosis of PANDAS, how the diagnosis was made, the false starts on treatment, and what worked for Sammy. Ms. Maloney will discuss her son’s subsequent full and complete recovery from OCD and Tourette’s. She will also discuss the impact that the book has had on PANDAS and bring the audience up to date on the work of the PANDAS Foundation.
