Welcome to the PandasNetwork.org Newsletter
July 15, 2012
Happy mid-summer to all of you! This newsletter gives you several quick updates in the ever evolving world of the PANDAS-PANS community. In this newsletter we highlight upcoming conference, two new studies, a research paper and parent and medical media efforts!
We continue to hear from families that treatment and healing trajectory is very different for children based on how long they have been ill, if they have autism, if they have an underlying autoimmune illness, acute onset vs. mild onset. It will take time to focus research and proper treatment plans based on such diverse scenarios.
PLEASE NEWCOMERS: It is very important to align with a family that has a child similar to your child in their "type" of PANDAS-PANS. We will connect you with a parent volunteer willing to assist you if needed.
Wishing you the very best,
Sincerely, Diana Pohlman, Vickie Blavat and PandasNetwork.org volunteers
Upcoming Conferences in
Chicago and Irvine
International OCD Foudation Conference - July 27th - July 29th
PandasNetwork.org is the only group representing the parents at this month's IOCDF Conference in Chicago. We have gathered data from 700 families who have signed up on our website survey. The data will be presented to the researchers and doctors at the conference. There has never been a face to our community before and we know it will solidify our cause. The handouts we prepare will be available to you after the conference.
PANDAS-PANS conference tracks are a little tricky to figure out on the scheduler! Remember the big day for our families is FRIDAY, July 27.
- Dr. Latimer and Vickie Blavat will be speaking from 11:30am- 12:30pm.
- Drs. Swedo, Hornig and Murphy will be speaking at 1:45pm - 3:45pm.
- Drs. Swedo, Jenicke, Storch and Susan Dailey will be speaking at 4:00pm- 5:30pm.
- ENDING WITH Q&Q 7:00pm-8:30pm with many of the doctors.
Check out their website for more information.
UC Irvine - Autoimmune Diseases of the Nervous System Conference - Sept 24th - Sept 25th
The Autoimmune Diseases of the Nervous System Conference will take place on September 24-25, 2012 at University of California, Irvine. Confirmed speakers regarding PANDAS are include Dr. Madeleine Cunningham, Dr. Tanya Murphy, Dr. Rosario Trifiletti, Dr. Mady Hornig, Diana Pohlman (PandasNetwork.org) and Beth Maloney (author of "Saving Sammy").
For more information on this conference click here.
Discussions regarding autoimmunity and changes to the blood brain barrier will be reviewed from many research angles.
Dr. Dritan Agalliu recently informed us that speakers have been confirmed and the registration website is still under construction. We will be sure to let everyone know the registration is open and when we find out what sessions parents can attend.
For more information on Dr. Dritan Agalliu, please click here.
Parent Community Highlights
Arizona: Kari Kling, a mother from Arizona and her family discuss an over three year journey to heal her then kindergarten son, Alex. Her twin 10 year old son both asked that their family story be told in the news in hopes of helping other children. I know Kari personally and it was an exhaustive look at the underlying initial triggers, strep (not detected by swab but blood test only) and later, mycoplasma. She used varying strategies to calm her son's tics and OCD. Treatment included antibiotics, IVIG and steroids.
To read more on Kari Kling's story visit her website.
North Carolina: A group of parents held a walk-a-thon in their community that raised $1,100.00 for Pandas advocacy and research. Thank you Michelle B. and others who created this courageous effort! PandasNetwork.org will se the funds to distribute literature, maintain the website, and reach out to researchers. And, to that end, we are closing in on the launching of Our Epidemiological Survey.
Some of the above donated funds will go to this survey. The survey will go to any and all families wishing to participate. The author and other researchers are finalizing edits to the survey and we PLAN on it being launched in the remainder of 2012.....I'm chomping at the bit to get this going!
Two New Studies
New Azithromycin Study is Actively Recruiting
Dr. Tanya Murphy's new study "Antibotic Treatment Trial for the PANDAS/PANS Phenotype" is currently recruiting!
"The purpose of this research study is to know if the antibiotic azithromycin...improves symptom severity in children with sudden and severe onset obsessive compulsive symptoms known as PANS, Pediatric Acute Onset Neuropsychiatric Syndrome, and PANDAS, Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus."
A full description of the study can be found at the Clinical Trial website.
To see if your child or patient qualifies, please review the inclusion/exclusion criteria first, then contact: Tanya Murphy, MD, Phone: 727-767-8230, Email: email@example.com or Laura L Ramirez, BS, Phone: 727-767-8230, Email: firstname.lastname@example.org.
European Multicentre Study of Tics in Children
This study involves 11 different countries of the EU to look at genetic susceptibility of tics believed to be precipitated by infection. They note that OCD and other types of psychiatric occurrences often categorized as Tourettes often occur with tics. This is co-sponsored by Dr. James Leckman, the co-sponsor of the NIMH, IVIG Study on PANDAS.
For more information on this study visit their website.
Noted Researchers Give Their Nod of Recognition to Pandas
Dr. Finn Somnier , Neurologist of Denmark National Institute of Health paper, "Autoimmune Encephalitis - History & Current Knowledge"
This new paper makes the case for physicians to consider PANDAS when acute personality changes occur after a strep infection. Encephalitis has not been a term used to describe PANDAS-PANS because encephalitis diagnosis currently requires white or grey matter inflammation. However, in acute onset PANDAS-PANS we know the microscopic basal ganglia nerves (not seen by MRI's and often not by PET scan) are inflamed. These nerves usually calm very well with prednisone.....often the only "clue" for neurologists willing to consider PANDAS-PANS.
For more information on this paper visit our website page.
Attached is a four page excerpt from the thirty-six page paper. Dr. Cunningham's excellent work on strep and badly behaving "anti-brain" antibodies that activate the basal ganglia is heavily cited. We will find out how the paper can be purchased and get that information to you later. If your child has an acute case, please tell your physicians about this paper.
Dr. Ian Lipkin, Neurology and Pathology, Columbia University DISCOVER Magazine (April 2012)
This is a rare opportunity for both the medical and mainstream community to learn about PANDAS-PANS. Dr. Ian Lipkin, world famous "virus hunter" discusses the implications of PANDAS and related illnesses. He discusses how underlying infection could be the cause of many behavioral changes. It is hoped he will be working other researchers on future PANDAS-PANS projects. He does not discuss treatment plans but gives his support for recognition that this "new illness" is a real syndrome.
Please click here to view this article.