PANDAS Network Newsletter - June 2019

SPRING ARRIVES WITH INSPIRATION - Two New Italian Studies show antibiotics (300+ cohorot) and IVIG (29 children) can help PANDAS children. We push on for U.S. medical support. Advocates are working hard. TWO great PANDAS Teen boys -- one tells his story of spiritual growth in his own words below and teenager, Catch Fehst, develops computer games -- invites your teens to join! MORE TO COME - Conference agenda will be out this month...coordinating is always challenging. WASH DC Oct 5 (doctors) Sunday, Oct 6 (parents) ENJOY These early tidbits for summer....The PANDAS Network Team

Two New Italian Pandas Studies

Successful IVIG trial with 29 children This Italian study looks at IVIG treatment in 34 severely ill PANDAS patients. In this study published in Journal if Neuropsychiatry - London, IVIG was shown to be effective in most of the cases. 29/34 children showed a reduction or disappearance in symptomatology. No complications were reported during treatment. It is so important that doctors, parents and patients are aware of all the available treatment options.  http://www.jneuropsychiatry.org/peer-review/pediatric-autoimmune-neuropsychiatric-disorder-associated-with-streptococcal-infection-pandas-clinical-manifestations-ivig-treatme-12554.html Successful Penicillin/Bicillin trial of 300+ children  The study looks at 371 (345 PANDAS/26 PANS) children who were treated with antibiotics (initial dose and 5 year prophylaxis). Children were followed for 7 years. 75 percent of PANDAS and 88 percent of PANS patients showed improvement of neurological symptoms.  https://read.qxmd.com/read/31140830/clinical-serological-characterization-and-treatment-outcome-of-a-large-cohort-of-italian-children-with-pediatric-autoimmune-neuropsychiatric-disorder-associated-with-streptococcal-infection-and-pediatric-acute-neuropsychiatric-syndrome

In HIS Words - A Teen Boys Speaks Courageously on Our Cycles of Sickness and Health

The cycle of sickness and health is something that we all know too well.   Sometimes we get sick and get better quickly. Getting sick and healing or learning to manage and illness is a very real kind of cycle that most of us will experience in our lifetime. Part of becoming an adult in the eyes of Jewish tradition is learning not only what it means to feel supported during the cycles of sickness, but being able to support those who struggle with their own cycles of physical, spiritual, emotional and mental health.  Read More

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JOIN the Fun! COMPUTER GAMES by a teen PANDAS warrior, Catch Fehst

Catch Fehst has struggled with P/P/AE so he created a group for teens with P/P or any other disability. Teens can hangout and talk about video games, comics and LEARN HOW TO CREATE GAMES! Professional gamers will interject to teach as well. Catch knows teens can't always join adult-related FBook groups so he made this fun group. The group is moderated by parents and direct contact can be made with his parents if you have questions. SEE HIS TOTALLY COOL!!! GAME PLATFORMS Below on his website. One game, CAT-DOG-TOE can be downloaded beginning in August 2019. Catch, you are an inspiration to us all.......such fun! Pre-order the app available in August at the following links App Store Link Website Link Facebook Link C atch and his Dad created this Facebook group for teens with some sort of disadvantage or PANDAS/PANS.

Facebook Link

Dedicated to improving the diagnosis and treatment of children with PANDAS and PANS