Notes from PANDAS Conference

Just a few notes from the PANDAS Conference in Norwalk, CT November 15, 2014. Any errors are mine. Videos of some of the speakers will be online in the future at NE PANDAS/PANS Association.

We extend a huge thank you to the speakers: Dr. Rosario Trifiletti, Dr. Judith Leventhal, Dr. Nancy O'Hara, Dr. Denis Bouboulis and all the volunteers in several different states who made this conference a reality. Another thank you goes out to all the guests. 

Dr. Bouboulis began his talk by mentioning Sir William Osler and his work with sydenham's chorea in the 1890s, which set the stage for the more modern research of PANDAS/PANS. He went on to explore several different case histories in which IVIG was successfully used to treat PANDAS/PANS and in some cases, Lyme Disease as well.

Dr. Trifiletti talked briefly about PANDAS striking at different ages, from infant to adult. Included in this list is the "Leroy" Syndrome (if you recall, Dr. T went to Leroy, NY and treated the girls who had come down with tic-like movements. Although the disorder made the news, his quiet treatment of the girls did not.) 

There are many different triggers, including strep, mycoplasma and coxsackie.

There is molecular mimicry with some triggers.

Immune deficiencies and autoimmunity is common.

Histamines play a significant role.

Several genes are implicated.

Dr. Nancy O'Hara stated that boys outnumber girls in getting PANDAS. There is often autoimmune disease in the family. There is not always a recent strep infection.

Strep is not always in the throat--it can present as a red anal ring or as peeling fingers/feet. Family members need to be checked for strep as well.

The CaM Kinase test by Moleculera Labs can be helpful in diagnosing PANDAS, especially if a clinical diagnosis cannot yet be made.

Treatments include: probiotics, xylitol, Saccharomyces Boulardi, Antibiotics, antimicrobial herbs as well as steroids, IVIG and plasmapheresis. Cognitive therapy is recommended. Helminth therapy can help as well. Prophylactic antibiotics may be required until adulthood.

Dr. Judith Leventhal presented on the neuropsychological effects of PANDAS/PANS/Lyme Disease. Common Diagnoses in children with Lyme Disease include: Sensory Processing Disoder, Auditory Processing Disorder, ADD/ADHD, Autism Spectrum Disorder, Obsessive Compulsive Disorder, PDD, Learning disorders, Bipolar Disorder, Oppositional Defiance Disorder and PANS/PANDAS.

Listed are some signs of encephalopathy: OCD, moods swings, math decline, handwriting decline, anxiety, sadness/depression, rage, aggression, seizures, tics, self-harming behaviors.

Children suffering from this have difficulty filtering out stimuli and can easily feel overwhelmed. They have difficulty focusing their attention. Children can feel frustrated and overwhelmed with too much information. They might have a hard time on the playground at school. 

Children can misread social cues. They might not be able to complete homework and may lose necessary items. They could have eye-tracking issues when it comes to reading, and this can affect driving when they are older.

Executive functioning issues include problem-solving difficulty, weak organizational skills, difficulty controlling impulsive behaviors and emotions.Some possible accommodations are: multiple choice assessments (for kids who have difficulty with word retrieval,) visually simplified materials, extended time, the elimination of speed exercises and bubble sheets.

Again, all videos will be posted in the future. Links to the websites will be announced at www.Facebook.com/panslife.