Compilation of Treatment Guidelines and Anecdotal Evidence
Fact Sheet HERE
Compilation of Treatment Guidelines and Anecdotal Evidence
Fact Sheet HERE
Pandas Network is thrilled to have been notified of Miracle Flights service of free and unlimited flights for medical treatment for children This nonprofit has been around for many years. Click here for more information.
The basic info is as follows:
One child and two accompanying adults can travel anywhere in the U.S. when seeking distant medical care. Also, children traveling internationally for treatment in the U.S. are eligible for help.
For income eligibility please call their office at 702-261-0494 and look at their website. A second requirement is that the treating physician’s office must confirm you are seeking treatment/second opinion.
February 28th, one 10 year-old raises money for PANDAS, help him out!
We are excited to share what a creative member of our community is doing to raise awareness for PANDAS! Kirk, a 10-year-old Bay Area 4th grader, is committed to making a HUGE impact by pogoing all the way across The Golden Gate Bridge! “Pogo for PANDAS” will take place February 28th. Check out the t-shirt he created and logo for the event. He’s rallied friends and family to share information on PANDAS we know will make an impact in his community and beyond. Kirk has already r…aised over $3,400 for PANDAS Network. A big thanks to those who have given including his sponsors: Pivotal, Gattey Law, Bryce Cook Real Estate Group and E9 Data. Way to go Kirk, we hope your idea will encourage others to think of creative ways to raise awareness for PANDAS and PANS. Want to support Kirk?!- make your tax deductible donation here. http://www.firstgiving.
Science of the brain is captured by the Cunningham Panel. Anti-neuronal, or misbehaving antibodies, are found in PANDAS-PANS patients. If a patient doubts their diagnosis AND/OR wants to be sure their healing is occurring — this test will show what is present in the brain. The test can be used at various points during treatment to ensure proper trajectory of healing. The recent JCAP (Feb 2015) showed 200+ ill patients and the level of anti-neuronal antibody injury in children’s brains who have PANDAS. There is much more detailed information on Moleculera’s website. See the video below.
PANDAS Network as a board – believes and has seen merit in this test. Please consider using it. AND call Moleculera if you have questions.
Share your Knowledge and Help Future Students
2015 European PANDAS Lake Como Conference was held on September 26-27, in Como, Italy at the Università dell’Insubria!
Click below to see the talks of U.S. researchers/advocates: Dr. Susan Swedo, Dr. Madeleine Cunningham, Dr. James F. Leckman, and Dr. Elizabeth Latimer and Diana Pohlman of PANDAS Network.
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!
Now en Español: En un Enredo con PANDAS (Kindle Edition)
The 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!
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 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.
The USF clinic is studying possible epigenetic markers in PANDAS children. Antibody targeting of brain structures are thought to be a core pathology issue in PANDAS. Finding an immune based mechanism within immune genes is important research which will advance treatment.
A fund has been established for future research projects with the MGH PANDAS clinic.
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.
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.
$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.
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.
Sterling Silver $50 ~ Gold Vermeil $75
* New Item* Sold Separately Sterling Garnet Charm $33- Gold Garnet Charm $38
Your necklace will come in a gift box along with a card explaining the significance of the piece.
Click to enlarge.