Entire JCAP FREE Online Until 3/15 Only!

Cover for Journal of Child and Adolescent PsychopharmacologyThrough March 15th only, you can download every article in the special edition JCAP!

Download them NOW! Articles include papers on IVIG, Plasmapheresis, and more. These tools can be useful at medical appointments and insurance purposes.

Click here for the full list:
http://online.liebertpub.com/toc/cap/25/1

JCAP PANS Special Issue Published!

Free first pageThe JCAP Special Edition online is the first collection of research papers on PANDAS/PANS written by a Consortium of researchers and physicians. It is pivotal to the advancement of treatment and research for this subset of children

This long awaited publication explains how “the link between inflammation and psychiatric disorders is slowly becoming stronger, and understanding PANS may help us understand not just how to better diagnose and treat youth with this syndrome but other youth with developmental neuropsychiatric syndromes and potentially the pathogenesis of psychiatric disorders as a whole.

The Special Edition content will appear as a whole in the printed edition, scheduled to be published by the end of February. If you ordered the hard copy of JCAP, you will receive all the studies listed and the introduction in their entirety.

The first page of the Special Edition is available for free. All other studies have abstracts available for view and can be purchased individually, requested by your library, or a health care professional may have access through their university or Hospital affiliation.

Your donation dollars are helping PANDAS Network bring this research to the frontline by allowing us to purchase 300 copies of this Special Edition JCAP to be sent to doctors both in the United States and internationally. Thank you for being our partner in these endeavors!!!

Cover for Journal of Child and Adolescent PsychopharmacologyCONTENT

 

 

 

Insight Into the Medical Consortium

Teamwork FeaturedPANDAS Network Executive Director, Diana Pohlman, had the privilege of being invited to sit on the most recent Consortium Call. She reports below on what is being discussed and how the Consortium Team continues to work together…

“I am grateful to have been on a recent PANDAS/PANS Consortium call.  The goal on the call was to assure PANDAS Network that donations made by the parents are fueling new, innovative research for the near future and beyond.  It was clear that they are being used wisely – and that the group is very enthusiastic about PANDAS/PANS research!

ts-awesome-chevron-circle-rightTONSIL AND ANTIBODY STUDIES
Your donations of $10,000 went to partly fund two studies:  First, the tonsil study by Drs. Latimer and Hartley. They have investigated the best use of tonsillectomies for children with PANDAS, and the role that tonsillar abnormalities may play in PANS.  Second, the investigation of antibodies using the Moleculera lab test in children presenting with PANDAS/PANS by Dr. Michael Cooperstock.  Both studies will likely be analyzed and published within the next year.

ts-awesome-chevron-circle-rightAZITHROMYCIN STUDY
Dr. Tanya Murphy is beginning to analyze the results of her placebo-controlled trial of azithromycin for PANDAS.

ts-awesome-chevron-circle-rightTWO GENETIC STUDIES
The Consortium is working together to identify genes that may contribute to the immune abnormalities of PANDAS/PANS.  There are two separate genetic studies underway – one led by Dr. Jim Crowley (UNC) which will use a Genome-Wide Association Study (GWAS) methodology to look for common genetic variants; the other led by Dr. Susan Swedo (NIMH) will utilize whole-genome/whole-exome sequencing to look for rare variants.  In combination, the two studies should provide powerful information about the genetic factors underlying susceptibility to PANDAS/PANS.”

 

NH Families Share Their Struggles with PANDAS

NH FeaturedThe “mind boggling connection” of PANDAS and strep is brought to life by two families share their battle with PANDAS.

The McCune and Nichols families are the focus of NHPR’s “N.H. Families Fight For Rare Diagnosis Linking Strep To Kids’ OCD”. They discuss the difficulties they experienced from finding doctors to diagnose to receiving the treatment their children desperately needed.

To read the article, visit: http://nhpr.org/post/nh-families-fight-rare-diagnosis-linking-strep-kids-ocd

Canadian Awareness Grows with National News Story

http://www.ctvnews.ca/polopoly_fs/1.2235665.1423865080!/httpImage/image.jpg_gen/derivatives/landscape_620/image.jpgCanada’s highly rated and respected CTV News visits families to learn about the difficult barriers PANDAS/PANS families are facing with the medical establishment in Canada. For many Canadians, this will be their first introduction to PANDAS and PANS.

 

W5: THE STREP CONNECTION (Videos Part 1 and 2)

Kerry Henrikson. Beth Maloney, Lloyd Robertson, Sherrie Morgan

K. Henrikson, B. Maloney, Lloyd Robertson, S.Morgan

Nearly every child gets it at some point, but as W5’s Lloyd Robertson explains, strep may lead to an incapacitating neurological condition.

To watch this informative 2 part news story, visit: http://bit.ly/1CA6lVt

 

 

 

W5 INVESTIGATES (Printed Article)

Canada family Featured revised

Reporter Lloyd Robertson with the Henriksons

“I wanted someone to help lead me through this. Nobody wants to watch their child deteriorate so quickly and feel like they can’t get anywhere in the medical system to get the help that the child needs,” – Leslie Castellani (Mother).

To read the accompanying article, “W5 investigates possible links between common infection and psychiatric and neurological disorders in children”, visit: http://bit.ly/1vPvBb6

Thank you to PANDAS/PANS Ontario founding members Kerry Henrikson and Sherrie Morgan for their continued commitment to helping PANDAS and PANS children!

 

 

 

 

Research Highlights Positive Treatments & More

JCAP CoverPositive treatment outcomes and more are the focus of the new research posted online for the highly anticipated Journal of Child and Adolescent Psychopharmacology special edition!

The online pieces are available as abstract only and will accompany  previously released online articles , including the groundbreaking Consensus Paper. If you ordered the Special Edition JCAP, you will receive the full versions in your copy once it is published in late February.

ts-awesome-arrow-circle-o-rightTherapeutic Plasma Apheresis as a Treatment for 35 Severely Ill Children and Adolescents with Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (Latimer, et al) – According to the provided abstract, therapeutic plasma apheresis (TPA), provided positive results to children experiencing a PANDAS exacerbation. Abstract: http://bit.ly/1DctFKg

ts-awesome-arrow-circle-o-rightCytokine Correlations in Youth with Tic Disorders (Parker-Athill, et al) - According to the provided abstract, “cytokine dysregulation (plays a role) in the pathogenesis of tic disorders”. Cytokines are important in health and disease, specifically in host responses to infection, immune responses, inflammation… (ref 1). Abstract: http://bit.ly/1DctO0h

ts-awesome-arrow-circle-o-rightUse of Intravenous Immunoglobulin in the Treatment of Twelve Youths with Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections (Kovacevic et al) - The case report of 12 youths with PANDAS treated with IVIG, provide new information about the short-term benefits of IVIG therapy, and are the first descriptions of long-term outcome for PANDAS patients. Abstract: http://bit.ly/1Dx3RZD

ts-awesome-arrow-circle-o-rightAntineuronal Antibodies in a Heterogeneous Group of Youth and Young Adults with Tics and Obsessive-Compulsive Disorder (Cox et al) – According to the abstract, immunological profiles for children with OCD and/or tics suggested that “youth and young adults with chronic tics and OCD may have underlying infectious/immunologic etiology.” Abstract: http://bit.ly/1KABkEv


PREVIOUSLY PUBLISHED ARTICLES

The following are previously released articles that will also appear in the upcoming Special Edition JCAP.

Can Strep Cause Behavioral Disorders?

Wholehearted Parenting radio show features Dr. Susan Schulman answering the question “Can Strep Infections Cause Behavioral or Psychiatric Disorders in Your Child?””

Listen to host Bonnie Compton APRN, BC, CPNP by clicking on the arrow below.

 

Register Now: Brown Univ. 2 Day PANDAS Conference

http://brown.edu/academics/medical/sites/brown.edu.academics.medical/themes/ursa-medicina/img/alpert-medical-school.pngOn March 14-15, Warren Alpert Medical School of Brown University will host the PANS, PANDAS, and Acute-Onset Neuropsychiatric Syndrome conference in Providence, Rhode Island!

This will be a two day event. Day 1 will be a medical conference offering CME credits. Day 2 will be a parent session with speakers. Please note that Day 1 is at Warren Alpert Medical School of Brown University and Day 2 is at the Marriott Providence. See below for details.


DAY ONE

Day one of the Brown University PANS, PANDAS, and Acute-Onset Neuropsychiatric Syndrome conference, on March 14th, will be a medical oriented conference. The impressive list of speakers will be eligible for CME credits as designated on the event flier. PANDAS Network is proud to help fund this event. Registration is NOW OPEN!

Day one of the Registration Information
Register online: https://apps.biomed.brown.edu/cme_registration.
Conference registration fee includes: Breakfast, breaks, lunch, access to an online syllabus, and complimentary parking.

Registration Fees
$155.00 Physicians
$95.00 Other Healthcare Providers and
Interested Community Members

Conference Location
Warren Alpert Medical School of Brown University
222 Richmond Street | Providence, RI 02912

To view the flier for DAY ONE, click here.

To REGISTER for DAY ONE, click here.
Please note you must register separately for day one and day two.


DAY TWO

Day two of the Brown University conference, on March 15, will be parent focused. The speaker panel from day one  will be available for questions and answers. Registration is NOW OPEN!

Day two of the Registration Information
Register online: https://apps.biomed.brown.edu/cme_registration.

Registration Fees
$50.00 One Family Member/Individual
$25.00 Additional Family Members

Conference Location
The Providence Marriott
1 Orms Street, Providence, RI 02903

To view the flier for DAY TWO, click here.

To REGISTER for DAY TWO, click here.
Please note you must register separately for day one and day two.

 

Thank you to Dr. Louise Kiessling for making this event happen. Your commitment to PANDAS and PANS children is remarkable!

 

 

Massachusetts Bill Needs Co-Sponsors! Your Voice Needs to Heard!

2/5/15 UPDATE: Thank you to everyone that urged MA Legislators to co-sponsor the Massachusetts PANDAS/PANS insurance Bill. We’ve just been informed it now has 34 co-sponsors! You have all done an outstanding job!


An Act relative to insurance coverage for PANDAS/PANS-Docket Number: HD 343 has been refiled by Representative John W. Scibak for 2015-2016 Legislative Session, and it is need of co-sponsors by Friday, January 30th!

HOW YOU CAN TAKE ACTION AND HELP

Phone FeaturedThe deadline for co-sponsoring this Bill is Friday, January 30th. Please take action TODAY and contact MA Legislators! Anyone (regardless of what state you live in), can contact MA Legislators to request support for the Bill, but we especially need MASSACHUSETTS RESIDENTS to take action. MA residents are their constituents and they are committed to representing you!

Phone calls are the most powerful tool. Ask to speak to the Legislative Director or the staffer that handles health-care related issues. If you are interested in having your friends, family, or colleagues write a quick email to their local representative, feel free to use/tweak the below template letter.

Massachusetts Legislature contact information can be found at: https://malegislature.gov/People/Search. A list of who is already signed on can be found at the bottom of this page

Please call Legislators to thank them for their support, but more importantly make sure you call the other representatives that have not yet signed onto the Bill. While we have been told that there is no direct correlation between co-sponsor numbers and the final disposition of a bill, every additional legislator that signs on is one more informed politician that will help us to build the momentum to put the control of our children’s medical treatments back in the hands of our dedicated PANDAS/PANS doctors and out of the reach of insurance companies.

EXAMPLE LETTER:

Docket Number: HD 343: An Act relative to insurance coverage for PANDAS/PANS

I would greatly appreciate your co-sponsorship of this important bill. By co-sponsoring this bill you will help children and their families struggling with this disorder by providing them with the opportunity to pursue the therapeutic recommendations of their doctors. Currently, many of these children are denied access to IVIg (Intravenous Immune Globulin) and other therapies by insurance companies more concerned with bottom-line profits than providing doctor recommended therapies. Sadly, this creates a situation in which families are forced to choose between their children’s health and financial ruin.

According to the National Institutes for Mental Health

“PANDAS, is an abbreviation for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. The term is used to describe a subset of children and adolescents who have Obsessive Compulsive Disorder (OCD) and/or tic disorders, and in whom symptoms worsen following strep infections such as “Strep throat” and Scarlet Fever.”

Recent research at NIMH has led to an expansion of the original PANDAS criteria and the subsequent use of the term PANS:

“PANS is a newer term used to describe the larger class of acute-onset OCD cases. PANS stands for Pediatric Acute-onset Neuropsychiatric Syndrome and includes all cases of abrupt onset OCD, not just those associated with streptococcal infections. “

If you would like more information regarding these disorders, please visit the National Institute for Mental Health’s (NIMH) website at

http://intramural.nimh.nih.gov/pdn/web.htm

Thank you for supporting this important piece of legislation.

Sincerely,

 


WHO TO CONTACT

Due to the success of this Bill during the 2014 legislative session, it is guaranteed a CHIA (Center for Health Information Analysis) review. This is a HUGE hurdle for any insurance mandate. We need your help contacting Legislators and motivating them to sign on and support Docket Number: HD 343: An Act relative to insurance coverage for PANDAS/PANS by Friday, January 30th!

CURRENTLY SIGNED ON:
Rep. Josh Cutler
Rep. Carolyn Dykema
Rep. Angelo Puppolo
Rep. Peter Kocot
Rep. James Dwyer

PAST SPONSORS WHO HAVE YET TO SIGN ON FOR 2014-2015:
Rep. Tom Calter (12th Plymouth-Kingston, Plymouth, Plympton, Duxbury, Halifax, and Middleborough)
Rep. James Cantwell (4th Plymouth-Marshfield and Scituate)
Rep. James Murphy (4th Norfolk-Hingham and Weymouth)
Rep. Ellen Story (3rd Hampshire-Amherst, Granby, and Pelham)
Rep. Walter Timilty (7th Norfolk-Milton and Randolph)
Rep. John Lawn (10th Middlesex-Newton, Waltham, and Watertown)
Rep. Marjorie Decker (25th Middlesex-(Cambridge)
Sen. Karen Spilka (2nd Middlesex and Norfolk-Ashland, Framingham, Holliston, Hopkinton, Natick, Franklin, and Medway)
Sen. Sal DiDominico (Middlesex and Suffolk-(Cambridge, Everett, Boston, and Chelsea)
Sen. Stan Rosenberg (Hampshire, Franklin, and Worcester Counties)

SUCCESSORS THAT STILL NEED TO SIGN ON:
We’ve also lost 3 co-sponsors due to changes in the Legislature. Please call to urge their successors to also sign on to the bill.
Rep. John Keenan (7th Essex-Salem) replaced by Rep. Paul Tucker
Rep. Steve Walsh (11th Essex-Lynn and Nahant) replaced by Rep. Brendan Crighton
Rep. Rhonda Nyman (5th Plymouth-Hanover, Norwell, and Rockland) replaced by Rep. David DeCoste

 

Thank you for your commitment to helping children with PANDAS and PANS! A special thank you to Heather, Jacob, and Rep. John W. Scibak for once again spearheading this effort!

CT Bill for Insurance Coverage Needs Your Help!

cga logo

CT Senate Bill 15: An Act Requiring Health Insurance Coverage For Pediatric Autoimmune Neuropsychiatric Disorder Associated With Streptococcal Infections needs your help with BOTH WRITTEN AND VERBAL TESTIMONIES!

CT RESIDENTS: Testimonies are needed by Monday, January 26 from CT residents to explain WHY treatment is needed and WHY insurance needs to cover treatment for PANDAS. We also need parents to take part in the PUBLIC HEARING on January 27. See below for details.


BE HEARD…SUBMIT A TESTIMONY BY 1/26

Be your child’s voice! CT residents, please share how your family has been impacted by PANDAS/PANS. Why is treatment so important? This must be submitted by 1/26/2015!

Girl FeaturedMotivate legislators to pass SB 15 by explaining how it would positively impact their constituents. Please have your testimony electronically submitted by noon on Monday 1/26 to [email protected]. They will submit all testimonies as a group. Or, contact your CT Legislators directly. Find him/her at: http://www.cga.ct.gov/asp/menu/cgafindleg.asp.

Suggested Guideline:

CT General Assembly
Insurance & Real Estate Committee Public Hearing
Testimony in Support of SB 15, AAC Health Insurance Coverage for Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections.

By YOUR NAME HERE
Submitted DATE, 2015

Senator Crisco, Representative Megna and members of the Insurance & Real Estate Committee. My name is (YOUR NAME HERE), I am a (YOUR CONNECTION TO THIS ISSUE, PROFESSIONAL DEGREES, RESEARCH, etc.) to support of SB 15.

PLEASE EXPLAIN THE IMPACT/PROBLEM OF NOT HAVING HEALTH INSURANCE COVERAGE FOR PANDAS.

PLEASE EXPLAIN HOW INSURANCE COVERAGE WOULD BE BENEFICIAL.

YOU CAN ADD ANY ADDITIONAL SUGGESTIONS TO EXPAND ON THIS BILL.


SHOW SUPPORT…ATTEND THE PUBLIC HEARING

Be the face of families and children affected by PANDAS and PANS! Please attend the public hearing on 1/27/2015.

CT FeaturedThe Insurance and Real Estate Committee will hold a committee meeting on Tuesday, January 27, 2015 at 1:00 P.M. in Room 2D of the LOB.
Legislative Office Building (LOB)
300 Capitol Avenue, Hartford, CT

 

Please submit 30 copies of written testimony to Committee staff two hours prior to the start of the hearing in Room 2800 of the LOB. Speakers will be limited to three minutes of testimony. The Committee encourages you to submit a written statement and to condense oral testimony to a summary of that statement. All public hearing testimony, written and spoken, is public information. As such, it will be made available on the CGA website and indexed by internet search engines.

For detailed information about the hearing location, please visit: http://www.cga.ct.gov/asp/CGABulletin/Bulletin.asp.

A Guide for Reaching State Legislators and Testifying at Hearings in CT can be found at http://www.cga.ct.gov/olm/yourvoice.asp.