Science Mag Highlights PANDAS & History of Mental Illness

Nautilis FeaturedPANDAS families give us a window into their stories while the journalist explains the history of psychiatry & how as “antibiotics took hold in medicine, doctors increasingly treated the body & brain as separate entities.”  Groundbreaking advances dispel misconceptions of mental illness derived from disease and now, PANDAS-PANS helps bring acceptance of infection triggered mental illness.

Read this well written article for insight into how “genes, environment, & immunity all interact in ways doctors are just beginning to unravel.”   To view Nautilus magazine article go to “Yes, You Can Catch Insanity

2015 PANDAS European Conference in Lake Como, Italy

Italy FeaturedRegistration is now open for the 2015 European PANDAS Lake Como Conference! It will be held on September 26 & 27, 2015 in Como, Italy at the Università dell’Insubria!

Speakers include: Dr. Susan Swedo, Dr. Madeleine Cunningham, Dr. James F. Leckman, and Dr. Elizabeth Latimer.

Presentations of the latest scientific advances in the diagnosis and treatment of PANS/PANDAS shall include topics touching on immunology, rheumatology, neurology, child psychiatry, psychology and more.  CME will be available within two weeks of the conference. The American Medical Association AMA has agreed to grant CME for European CME upon application.

ts-awesome-chevron-circle-rightFor more information on this exciting event, visit pandascomo.com.

 

 

Mental Disorders & Illness Linked in Teens

Teen Featured35% of adolescents reported at least one mental disorder overlapping with one physical disease, accordingly to new research in Psychosomatic Medicine.

Among the correlations cited, depression occurred more often with digestive issues and anxiety often had a co-morbid occurrence with arthritis, heart disease and diseases of the digestive system. Eating disorders also had a higher likelihood of including seizures.

Such finding further reinforce the importance of investigating possible PANS when a sudden onset of neuropsychiatric symptoms surface.  PANS (Pediatric Acute-onset Neuropsychiatric Syndrome) is when an infectious trigger, environmental factors, and other possible triggers create a misdirected immune response results in inflammation on the brain. In turn, the person quickly begins to exhibit life changing symptoms such as OCD, severe restrictive eating,  anxiety, tics, personality changes, decline in math and handwriting abilities, sensory sensitivities, and more.

According to the revised 2012 NIMH guidelines, PANDAS and PANS can occur post puberty.

To read the abstract of the study, Association Between Mental Disorders and Physical Diseases in Adolescents From a Nationally Representative Cohort, visit:
http://journals.lww.com/psychosomaticmedicine/Abstract/publishahead/Association_Between_Mental_Disorders_and_Physical.99101.aspx.

JCAP is Being Distributed Across the Globe!

JCAP MailingsPANDAS Network is initiating a global outreach effort to continue the understanding and acceptance of PANDAS and PANS!

Your support and donation dollars allowed PANDAS Network to purchase and distribute 300 copies of the Special Edition Journal of Child and Adolescent Psychopharmacology. These copies are currently on route to a variety of providers, spanning all medical specialties. This includes not only practitioners within the United States, but also in Canada and abroad.

Our goal is to have PANDAS/PANS children diagnosed early and receive needed treatment. We believe the JCAP will give providers the tools and confidence to correctly identify these children and begin appropriate treatment in a timely manner.

Without your financial support, this would not have been possible. Thank you!

Professionals & Parents Convene at Brown University

BrownThe Brown Medical School conference on PANDAS, PANS, and Neuropsychiatric Syndrome provided a sense of acceptance and optimism as it was well attended by varying medical specialties and hosted by a well respected University. Two PANDAS Network Board members had the privilege to sit with psychiatrists, pediatricians, neurologists and more as they convened to learn, share, and provide guidance that will help our children.

ts-awesome-chevron-circle-rightPresenters expressed what they are seeing in their practices. For example:

  • How patient profiles vary by region (ie. tics is the primary symptom in a lot of kids in Florida, OCD on the Northern East Coast)
  • Possible trends with immune deficiencies and PANDAS
  • The need to prophylactically prevent future strep infections in children who have been diagnosed with PANDAS and PANS to lower the re-occurrence of neuropsychiatric symptoms
  • Strep can survive deep in the tonsils, even if swab is negative (Drs. Harley, Latimer study to be published, funded in part by PANDAS Network).
  • 80% of PANS falls into the strep triggered PANDAS category.
  • When onset is post puberty, it’s more likely to be a non-strep trigger.

ts-awesome-chevron-circle-rightMedical professionals confirmed points of anecdotal information parents have shared through the years,  such as:

  • How other subsequent triggers for PANDAS/PANS may include dental work, primary tooth shedding, menses, & viral triggers such as HSV outbreaks
  • The benefits of anti-inflammatory medications when taken under the guidance of a physician

ts-awesome-chevron-circle-rightGuidance to practitioners and parents was shared, including:

  • How some psychiatric medications have immune based properties so one should be careful for drug interactions
  • Discussions regarding antibiotics and strep
  • The need for a complete clinical workup…from labs to physical exams to family history. It was stressed that lab tests can confirm a PANDAS/PANS diagnosis, but does not make the diagnosis
  • Not all asymptomatic streps are carriers. Recheck after finishing a course of antibiotics to see if strep is still present.
  • Lab tests can confirm a PANDAS/PANS diagnosis, but does not make the diagnosis.
  • Perianal strep cultures may be run as wound cultures.
  • NIMH researcher found EEG abnormalities in sleep studies of severe PANDAS children and concluded that 16.6% of PANDAS children had abnormal EEG’s
  • Production of symptoms by passive transfer of antibodies fulfills last criteria for establishing a disorder as autoimmune. This has been done with PANDA.
  • Collateral damage of the controversy includes at least 3 deaths due to PANDAS-one from suicide and two from anorexia.

 

Overall, we can see from the approximately medical professional that attended there is interest in the health and well-being of our children. There is a desire to learn the unique nature of these disorders and develop treatment guidelines that will ultimately aid in the recovery of our children.

Once again, we thank Dr. Louise Kiessling and Brown University Alpert Medical School for this opportunity. And thank you all that attended.

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