New! Children’s book on PANDAS and treatment

A Pickle Over PANDAS

This is a wonderful, new, picture book explaining PANDAS symptoms and treatment. A sweet, compassionate and thoughtful read for parents and children alike.

Written by, Melanie Weiss, RN and advocate. A portion of proceeds will go to PANDAS research.

For a sneak peek and to buy the book, click here!

Registration NOW OPEN! Midwest Conference August, St. Louis MO

Midwest2 FeaturedAugust 7 and 8 are the days to mark on your calendar for the upcoming PANDAS/PANS educational conference in St. Louis, MO.

CME credits for doctors, nurses, psychologists (including schools), social workers, and therapists.

Register for the Midwest Conference: Register Here or visit their website at: www.midwestpandas.com

 

See Day 1 and Day 2 below:

FlyerDay1FlyerDay2

 


Toys Donated to Expanding Stanford Clinic

Toy Drive featuredThe Stanford PANS Clinic (LPCH) is fast developing into a progressive example of what PANS treatment can be around the U.S. and the world. In efforts to improve services to the local community, the clinic is slated to expand its availability and staff. To compliment that growth, PANDAS Network will be implementing an exciting toy donation program to ease stress of children during their clinic visits. Thanks to generous gifts made by LeapFrog, Jade’s Toy Box and your donations – over 200 stuffed  animals, learning toys, coloring books, pens & crayons were gifted to PANDAS-PANS children.  We had an overflow of LeapFrog toys for ages 3-5 that additional toys were sent to the Georgetown and Univ. of S. Florida Clinics!  Read below for details about these 2 exciting announcements!

 

Expansion of the Clinic in next 6-12 months

Dr. Jenny Frankovich, Pediatric Rheumatologist has been an outspoken advocate for our PANDAS/PANS children, whose illness range from mild to severely ill. In the past year the local community (90 mile radius) has inundated the small clinic that has operated only part-time. Dr. Frankovich and our children have won over the hearts of Stanford LPCH staff and it has been awarded funds to expand to 5 days per week, broaden the staff, and increase hospital access for severe cases. For the near future, it will only serve local children and physicians will include: 3 psychiatrists, 2 nurse practitioners, an immunologist and rheumatologist.

 

PANDAS Network donates toys to ease children during their clinic visits

PANDAS Network is proud to pilot a new outreach effort to support the clinic kids! Thanks to generous gifts made by LeapFrog and Jade’s Toy Box, stuffed animals, learning toys, drawing pens & pads, coloring books, for the 200+ local families visiting the clinic. We hope to expand this simple outreach to all new PANDAS-PANS clinics as they grow throughout the U.S.

The PANS team is under the umbrella of LPCH’s research and innovation efforts and is working to design meaningful research and treatment advances for PANDAS-PANS children.

Research Money is Taking Action

$12,000 of research grants have been awarded to PANDAS/PANS research by PANDAS Network! Recipients include: Drs. Earl Harley & Beth Latimer, Dr. Tanya Murphy, & Dr. Jennifer Frankovich. Read below to see how your donation dollars are being put into action.

ts-awesome-chevron-circle-rightTonsil study shows autoimmune inflammation present in PANDAS children

A $5,000 Research Assistance Grant helped to fund the recently published tonsil study, Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus Immunology: A Pilot Study, by Drs. Beth Latimer, Neurology and Earl Harley, ENT (Georgetown University). This study shows PANDAS children have significant autoimmune induced inflammation. Two more papers will be published soon showing the kids reaction post-surgery and IVIG treatment.

 

ts-awesome-chevron-circle-rightUSF to research immune dysregulation in PANDAS children

A $4,000 Research Assistance Grant has been awarded to Dr. Tanya Murphy. Over a one year period, she will investigate monocyte activation in PANDAS patients in the USF Clinic. Monocytes play a central role in directing the immune system’s response to infection. Understanding the role of infection and immunological responses in PANDAS will help provide insight into a potential cause of disease, as well as, specific tools for diagnosis and treatment.

More specifically, Murphy will investigate TLR/CD14 pathways that are an integral to monocyte activation. Understanding the role of this pathway in PANDAS may help direct the search for gene targets because studies in this pathway have shown that TLR gene variants can influence susceptibility to infection and illness.

 

ts-awesome-chevron-circle-rightStanford Clinic to perform local sertotype strep testing

$3,000 has been gifted by local PANDAS Network families to be used especially for serotype strep testing in local communities. The hope is to test the positive strep swabs of PANDAS children who have a new onset or re-exacerbate in hopes of identifying the “strep type” that may be causing PANDAS. Although strep experts believe any type of strep can cause PANDAS identifying the particular serotype has long been a desire of parents.

 

Click here to learn more about our impact and how PANDAS Network puts your donation dollars to action.

This Mother’s Day: Give Hope with the BELIEVE Necklace

PANDAS/PANS – It takes a village.

It takes a village to LEARN and understand a disorder that can affect the lives of thousands. It takes families to SUPPORT and BELIEVE in their children and in a cure. It takes COURAGE to ask questions and continue along life’s sometimes difficult path. It takes COMMUNITY to make a change.

Please support the children and families dealing with PANDAS/PANS by wearing this necklace. Let it be a sign of undying HOPE and a QUEST for a cure.

100% of the profits on this necklace will go to pandasnetwork.org to help fund research and support families struggling with PANS/PANDAS.

A special thank you to Baroni Designs for partnering with us to develop our sterling silver and gold vermeil necklaces.

Blue Buy Now

Believe Necklace Featured

Sterling Silver  $50 ~ Gold Vermeil  $75
Your necklace will come in a gift box along with a card explaining the significance of the piece.

 

OTHER IMAGES
Click to enlarge.

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Baroni Box Website

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Believe Necklace Cropped

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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.