Welcome to the PandasNetwork.org Newsletter
March 6th, 2012
Thank you for being supportive of our network of parents and professionals. We are working with the IOCDF as they develop publicity and research efforts. It will take time for solid research to be published and until then our anecdotal stories must spur on physicians to treat.
In this issue we highlight the New! And MUCH improved NIMH Website which, frankly, in the past confused matters due to the narrow advice on strep titers. As you read, you will see the NIMH now encourages the doctor mind to attempt quick antibiotic treatment, prophylaxis in continuing care and additional lab tests to consider for newly sick kids.
Also, the first ever California PANDAS Conference Registration is open (April 28th) highlights are listed. Thank you Amy Smith, Nurse Practitioner for organizing this exciting event.
Lastly, a thoughtful write up on PANDAS and PANS has been added to our website by parent, and medical professional in Long Island, Melanie Weiss.
Wishing you a joyous spring and continued healing of our children.
NIMH Website Updates The PANDAS Information Page
By: Vickie Blavat
The NIMH has been busy updating the PANDAS information page on their website! These updates quickly followed the release of the White Paper, "From Research Subgroup to Clinical Syndrome: Modifying the PANDAS Criteria to Describe PANS (Pediatric Acute onset Neuropsychiatric Syndrome)" by Drs. Swedo, Leckman, and Rose.
To read the newly updated NIMH PANDAS page, please visit http://intramural.nimh.nih.gov/pdn/web.htm.
The NIMH page shows that PANDAS remains the term used to identify a subset of children in which OCD and/or tics disorders surface or worsen following a strep infection. To clarify, PANDAS has not being changed to PANS. Rather, PANDAS falls under the umbrella of PANS (Pediatric Acute-onset Neuropsychiatric Syndromes). PANS is the new, broader clinical identification for children with sudden onset OCD and acknowledges the possibility of various triggers, not solely strep. Further down on the page, one can find an entire section devoted to PANS, it's criteria, etc.
Among the various sections of the updated page, one should note the five criteria needed for a PANDAS diagnosis. These have been slightly altered both in the sequence and explanations. Some of the changes include:
- An edit in the pre-pubertal age criteria which now includes a clause saying it is possible for PANDAS to happen to adolescents.
- The list of the accompanying neuropsychiatric symptoms has been broadened to include additional possibilities such as sensory abnormalities and developmental regression.
- The episodic course in the original NIMH criteria now emphasizes the abrupt onset of symptoms and their relapsing-remitting course of symptom severity.
- The criteria that mentions the relation to strep is elongated to remind physicians of the possibility of asymptomatic infections. It also reminds physicians the need to follow up negative rapid strep tests with strep cultures as rapid tests carry 10-15% failure rate in detecting an infection. This section also refers to titers and charting of rising and falling titers that are beneficial in determining if an infection is/was present. The NIMH urges doctors to promptly treat strep infections.
The NIMH encourages physicians to thoroughly seek out what is triggering the symptoms and lists various ways strep can hide and how children may react to exposure as well. They reinforce PANDAS is caused more than "strep throat". Various treatments are discussed including antibiotics, IVIG and plasmapheresis.
The page ends with the a newly added prophylactic antibiotic section. Even though the NIMH cannot definitively support the use of prophylactic antibiotic, they are not against it. In fact, the NIMH states, "To avoid future episodes of PANDAS, it may be helpful to use antibiotics as prophylaxis (prevention) against strep infections." and provides supporting diagrams and references as to why PANDAS children may benefit from them. It appears the NIMH is allowing clinicians to make the decision on a case by case basis.
Overall, the revised NIMH PANDAS page is well done. PandasNetwork.org appreciates the thought and effort put into the revisions. We hope they will help more children get the diagnosis and treatment they need to recover.
in Northern California
By: Amy Joy Smith, Nurse Practitioner
We are very excited to hold the first-ever PANDAS conference in California for families and interested physicians.
Registration is $55 and includes a full day of speakers and dialogues, from 10am - 5pm, Buffet lunch and afternoon refreshment included.
Some topics of discussion:
- The current thinking in the PANDAS world: treatment, lab tests, infectious triggers, teen and adult PANDAS is it treatable?
- The new study on the Blood Brain Barrier by Neuroscientist, Dr. Dritan Agalli
- Navigating the School System, Advocacy and Insurance Issues
- Family System Stress - how do we heal our hearts?
- Dr. Swedo's "White Paper" - What does it say for the future of research and treatment
We will be announcing some pre- and post- conference gatherings (Friday and Saturday evening) to make the most of every minute we are together for anyone who can come to them. Most of these will be included in the price of a hotel room at Embassy Suites, so please consider staying over if you can.
There is currently room for 100 attendees, but it is possible that if the event fills up we may be able to negotiate a larger space at the hotel, so PLEASE HELP US PLAN by making your registration EARLY.
I hope to see some of you there!
Thank you for everything you do for your children and just to survive, and to move PANDAS forward.
SPONSORS NEEDED for Scholarship Fund: We would like to have a Scholarship Fund to help parents who really need it get to the conference (any amount helps!). See Sponsorships link on the event website.
Please share this with anyone you think may be interested and not connected necessarily connected to the flow of PANDAS info.
Parent Overview of PANDAS and PANS
PANDAS parent advocate/mother, Melanie Weiss, has a background in medicine and has written a thoughtful overview of this illness. It is an excellent reference for new parents and she provides her contact information for anyone who would like to discuss their family situation.
It is posted on our website: The Pandemonium of PANDAS
We are open to publishing parents' articles about this pediatric illness and update our site regularly with media stories. Parents and doctors have an expectation that our site continues to be a place for progress and discussion at a time when anecdotal stories and media attention far outstrip medical research. To that end behind the scenes we push nearly daily for more research and improved methods of connecting parents to each other.
Let's not forget it is all our voices that is making this awareness happen. Every parent has worked hard for this....... we'll just keep pushing.
Diana Pohlman and PandasNetwork.org