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PANDAS Presentations at Autism One Generation Rescue Conference Address Tics, OCD, More

OCD_child At the Autism One/Generation Rescue 2010 Conference
Chicago, Illinois
Register at www.autismone.org

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.


Friday, May 28 & Saturday, May 29
PANDAS Presentations

Fri.   1:45 Drs. Susan Swedo & Madeleine Cunningham
Fri.   3:00 Dr. Rosario Trifiletti
Fri.   4:00 Dr. M. Elizabeth Latimer & Laura Matheos
Fri.   5:00 Dr. Denis Bouboulis & Lynn Johnson
Sat. 4:00 Beth Alison Maloney

Bios and presentations below the jump.

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 Neuropsychiatric Disorders Associated with Streptococcal Infection (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. Co-presenter 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 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.

Comments

Teresa Loffer

I have a question. I have a child with autism, and after watching a program portraying a child with Pandas, I have to believe there has GOT to be a connection between autism and PANDAS. My son acts so similar to the symptoms of PANDAS, except that his onset was 10 months. It would also explain the immunity/immunization question as to why so many of our kids seem to suddenly get sick so close to their immunizations. I know this is an older site, but the discussion above doesn't seem to say whether or not they've established a link between strep/autism/pandas, or what.

pandasparent

Marilyn, yes, PANDAS has surfaced in some adults as well. I believe the theory is that PANDAS is pediatric ONSET. Meaning he may have very well had a PANDAS exacerbation before but it was more mild and even went undetected. The hope is that most kids will "outgrow" PANDAS with puberty (I belive the Blood Brain Barrier closes more), but I have heard a few adults say they had PANDAS as a child and still have flairs. A young woman who has PANDAS recently started a facebook group. She, herself, has PANDAS.
http://www.facebook.com/?ref=logo#!/group.php?gid=131937540165625&ref=ts

Now, some people have seen good results on penicillin to then have a setback about 2 weeks after starting it. If this happens, it probably did not erradicate the infection and he needs something like Augmentin or Zithromax. I suggest getting all family members tested and to do a follow up strep test on him 3 weeks after finishing all meds (unless they put him on a prophylactic antibiotic). Make sure he is taking probiotics as well. Space them out a minimum 2 hours after taking the antibiotic.

marilyn carls

My son who is 34years old who was diagnosed with tuberous sclerosis when he was seven.
He recently became ill with very strange behavior, anxiety about everything. He was unable to go to work or be left alone. After being taken back and forth to the doctor and to the ER twice, i was told that all tests came back normal. He had MRI, Ctscan, EEG, blood work and urinalysis done. After all of these tests the only thing that they found was that he had strep throat. He was given penicillin for it and after 48 hours all the upsetting behavior was going away. Even though he is not a child could he have had PANDAS, is there anyone out there that would know?

pandasparent

In regards to strep, PITAND (as cited above) encompasses other infections as well and is not soley related to strep. Also, just a fyi, strep occurs in many places. Not just strep throat. This is where many doctors fail. Strep in the throat, sinuses, ear infections, gut, and "privates". PANDAS is caused by the antibodies and those antibodies are activated by strep, regardless of where it is hiding. As for vaccines,many PANDAS kids have adverse ractions to vaccines and will have an exacerbations in symptoms following them. For some, their first known episode of PANDAS occurred post vaccine, probably because they had an undetected infection and the vaccine sent their immune system into overboard. Often strep or another infection is the original trigger but subsequent exacerbations may occur whenever the immune system is activated.

Sorry for the long explanation:)

Jenny W

um... What's it mean if I used to (still) line up my crayons like this?
I joke --but know that I come from a long line of OCD, tourettes, and always suffering from strep!

My family is torn up from the floor up!

Benedetta

My son too has been dignosed with tourettes.
He also has compulsive obsessive behaviors too. He also has aspergers.

He did not have a strep infection to cause this but a stroke - a reaction to a DPT vaccine.

So yes, indeed our two communities maybe very closely linked.

Vickie

Today, May 1, we start voting to win a $50,000 Pepsi Refresh Everything Grant for PANDAS research. This money will be given to Dr. Cunningham, one of the speakers mentioned above. Please consider supporting this cause. Thank you!

Help Kids in Crisis! Refresh the Research! Vote Project P.A.N.D.A.S.

http://www.refresheverything.com/PANDAS

PhillyLisa

My daughter was diagnosed with Tourette Disorder, which didn't really surprise me as there is a history of it in our family. Still, I asked the pediatrician about the possibility of PANDAS. She said that whole theory had been discredited. The neurologist who had made the diagnosis said she couldn't do anything to help her and referred her to a psychiatrist. I can't describe the hell my daughter, and all of us a family, experienced for the next year and a half. Finally, our GI doctor suggested a six-month course of antibiotics for PANDAS. The end of that six-month period coincided with me removing my daughter from an extremely stressful school situation. Within one week all tics had ceased. Nearly two years later she is still free of all tics, and while she still has OCD and anxiety there is much improvement there as well. Her newer doctors who hadn't known her two years ago find it hard to believe she ever had a Tourette diagnosis. Whether it was the antibiotic treatment for PANDAS or the change in school placement, I may never know. I'm extremely grateful for the doctor who was willing to try treating for PANDAS. He was the only one who ever gave us any hope.

pandasparent

As a PANDAS parent, I am so happy this bridge is being built between our two communities!

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