Merck Manual Recommends Plasma Exchange for PANDAS

Plasma Exchange is accepted as a 1st-line therapy, either alone or with other treatment for PANDAS, according to the Merck Manual and the American Society for Apheresis.

The full ASFA guidelines, as established in the 2013 Journal of Clinical Apheresis, appeared in their ‘Special Issue’ that is published every 3 years. The guidelines can be found at: Guidelines on the Use of Therapeutic Apheresis in Clinical Practice—Evidence-Based Approach from the Writing Committee of the American Society for Apheresis: The Sixth Special Issue.

Merck Manual on Therapeutic Apheresis:
http://www.merckmanuals.com/professional/hematology_and_oncology/transfusion_medicine/therapeutic_apheresis.html#v977085

In related news, a recent case series of 35 youths, TPA (Therapeutic Plasma Apheresis) was found to “produce dramatic clinical benefits”. The same case series cited that “these cases clearly demonstrate that inclusion of TPA in a multi-faceted treatment approach has potential benefits for children and adolescents with severe symptoms of PANDAS”. Latimer et al. 2015.

 

 

Support IL PANDAS/PANS Bill for Advisory Council

Government FeaturedIllinois Senate Bill 1684 to create an Advisory Council on (PANDAS/PANS) Pediatric Autoimmune Neuropsyhiatric Disorder Associated with Streptococcal infections and Pediatric Acute-Onset Neuropsychiatric Syndrome to advice the Director of Public Health on research, diagnosis, treatment, and education relating to the disorder and syndrome is working its way through the Senate.

Please take a moment and support Illinois Senate Bill 1684 before 3/24/2015. You can decide if you simply wish to support the Bill in name only by filling out a Witness Slip or you can go a step further and include Testimony explaining why this Bill is needed and how it would be beneficial.

Directions are as follows and it only takes a few minutes. Easy as 1, 2, 3!

HOW TO CREATE A WITNESS SLIP FOR SB1684

1. Locate Specific Hearing and Bill.
Go to http://bit.ly/1xmkN4N. Find SB1684, Thomas Cullerton, PUBLIC HEALTH-ADVISORY COUNCIL.

2. Create Witness Slip.
IL BillClick on the “Create Witness Slip” box. Click on image to the right if you are having difficulty finding it.

  • Section I. “IDENTIFICATION”
    Fill in the self-explanatory items—first and last name, street address, city and zip code.
    Under “Firm, Business or Agency,” fill in the name of your organization, or write “Self.”
    If you are filing on behalf of your self, fill in “NA” under “Title.” FYI, you will not be able to submit a Witness Slip that contains a slash in any field.
    Be sure to include your email address so you can receive confirmation of submission.
  • Section II. “REPRESENTATION”
    Fill in the name of your organization, or write “Self.”
  • Section III. “POSITION”
    Support the proposed legislation, select “Proponent.”
    Make sure you click inside of the round button, and that it is highlighted.
    It is a good idea to use the scroll bar to navigate the screen, as the arrow keys may accidentally change your “proponent/opponent” selection.
  • Section IV. “TESTIMONY”
    If you are submitting a witness slip with no additional testimony, check “Record of Appearance Only.”

3. Submit Witness Slip.

  • Check the box, “I Agree to the ILGA Terms of Agreement.”
  • In the box that says “Type in the test above,” type in the visible letters and numbers.
  • Finally, click the button that says “Create” and the Witness Slip will be submitted. If you have left something blank or answered incorrectly, you will see a note on the top of the form indicating the field that needs to be fixed.

You should receive a confirmation email shortly.

Thank you for your commitment to helping PANDAS and PANS children! Be sure to send this information to anyone wanting to improve the lives of children with PANDAS/PANS.

Why A Correct Diagnosis Can Be Life-Changing

Sad Girl FeaturedA FOUR YEAR OLD should not be admitted to a psychiatric facility after a sudden onset of symptoms surface without first looking into possible strep or other infections. Thank goodness the JCAP helped the Nichols family find some of the answers they needed!

Read Advocating for your child when doctors doubt the diagnosis to learn how the Nichols family almost lost their young son to a misdiagnosis when in actuality it was an undiagnosed, asymptomatic strep infection triggering PANDAS.

Advocating for your child when doctors doubt the diagnosis
http://www.phillyvoice.com/pandas-disorder/

Educational Convention to Feature PANDAS Poster Session

The Council for Exceptional Children annual convention in San Diego will feature a poster session on Families’ Experiences with PANDAS and Related Disorders by Patricia Rice Doran on April 11, 2015. This poster session is ideal for educators, school staff, intervention specialists, and anyone who is interested in learning more about these autoimmune disorders.  Information for this session appears below. To learn more about the CEC annual convention, please visit http://cecconvention.org/

 

Session Information
Session Leader
Patricia Rice Doran, Towson University, MD
Sat, 4/11: 9:15 AM 10:00 AM
2177
Poster Session
Saturday, April 11, 2015
San Diego Convention Center
Room: Poster 23, Expo Hall F

Abstract
This session presents data from a qualitative study investigating the school experiences and concerns of families of children diagnosed with Pediatric Autoimmune Neuropsychiatric Disorders Associated with Strep (PANDAS) or Pediatric AcuteOnset Neuropsychiatric Syndrome (PANS). Diagnosed with increasing frequency in recent years, PANDAS and PANS impact students’ functioning across social, emotional, behavioral, motor, and academic domains. We will describe common elements of families’ experiences with PANDAS or PANS and identify strategies and accommodations that families report to have been beneficial for their children.

Primary Topic Area
Physical/Health/Multiple Disabilities
Secondary Topic Area
Parent/Family/School Partnerships
Families’ Experiences with PANDAS and Related Disorders

JCAP PANS Special Issue Published!

The 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 “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 studies have abstracts available for view. The articles can be purchased individually, may be available through a medical library, University or Hospital affiliation.

ts-foundation-alertIf you are having difficulty receiving help, diagnosis, or treatment, the Consensus Statement, written by a Consortium or researchers and physicians, is an item worth investing in and presenting to your physician.

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!!!


CONTENT


FIRST PAGE

Mary Ann Liebert has made the first page available for free.

 

 

 

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

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!