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Welcome to the PandasNetwork.org Newsletter
August 17, 2012

Dear Families, 

 

This newsletter highlights the IOCDF Conference in Chicago. I believe at least 300 parents attended for PANDAS-PANS lectures up from perhaps 100 last year. Your donations went towards a beautiful display table regarding PANDAS and a thank you dinner for researchers and new treating physicians.

From left to right: Dr. Kiki Chang, Dr. Tanya Murphy, Diana Pohlman,
Dr. Elizabeth Latimer, Dr. Susan Schulman, Dr. Susan Swedo, Dr. Jason Spielman,
Dr. Gary Salem, Dr. Paul Grant, Vickie Blavat, Dr. Miroslav Kovacevic

These doctors (and a few others unable to attend) represent the core of the research movement of PANDAS-PANS.

Opportunities like these for these doctors to meet are important because there are few chances for these courageous innovators to discuss their findings candidly. Doctors from Stanford University Children's Hospital (California) are planning on opening a clinic in 2013 to treat the most severe PANDAS case (represented by Dr. Kiki Chang, Psychiatry). New to the group was Pediatrician, Susan Schulman (Brooklyn, NY) and Psychologist, Jason Spielman (Southern Florida).

 

The doctors talked for 4 hours and were able to discuss their treatment results. The notes we took from the conference meetings mirror what was discussed at the dinner. I expressed the need for doctors to write up and publish their case histories so new doctors can come on board. Swedo explained that more video of choreiform presentation is needed as an educational tool for doctors.

 

IOCDF COMMITMENT TO RESEARCH -

PARENT OUTREACH NEEDS

 

The big takeaway for me at the IOCDF is that the foundation is committed to funding research on PANDAS-PANS. Mike Jenike and Susan Dailey held a candid discussion with parents asking for research project ideas.

 

I explained that parents have the immediate need for emotional support and education materials. Also, physicians contact

PANDASnetwork.org for treatment protocol. For now, the IOCDF is unable to innovate in this area and asked PANDASnetwork.org to develop a larger assistance plan.

 

PANDASnetwork.org is run by volunteers and as the 501c3 federal status is pending we are seeking every means possible to make this a viable non-profit that directly impacts families. We currently do not have a stable source of funding, but are committed to giving families and physicians help and support. I have to admit - I remain committed in part because my second child (7 year old daughter) has now presented with chorea and PANDAS symptoms that we thankfully arrested quickly with Azithromycin. Also, my neighbors child developed PANDAS simultaneously and yet local doctors still are hesitant to treat. All of the PANDASnetwork.org main volunteers have PANDAS children that are improved with antibiotics and/or IVIG and understand the need to gain wider acceptance of PANDAS-PANS.

 

We will push forward in the wee hours of the night to keep things moving......

 

Sincerely, Diana Pohlman

Founder, PANDASnetwork.org

 

HANDOUTS Available on the Website

 
  

PANDASnetwork.org created new information handouts on PANDAS-PANS that we presented at the conference. Please use these to educate doctors and teachers. The first handout explains the nature of PANDAS. The second handout provides statistics of 700 parents surveyed and likely prevelance of illness in the US. These will remain on the website for your use.

 

Overview Handout

 

Statistics Handout

 

http://pandasnetwork.org/wp-content/uploads/2012/08/Statistics.pdf

 

Registration Open for Univ. CA Irvine Conference-

Featuring Well Known PANDAS Researchers!

 

 

An exciting list of speakers will present at the School of Biological Sciences at the University of California, Irvine's "Autoimmune Diseases of the Nervous System" conference on September 24-25. Thanks to Dr. Dritan Agalliu, Neuroscientist researching the blood brain barrier, for having the FIRST EVER conference focusing entirely on PANDAS. Pros and Cons will be discussed by speakers such as: Drs. Madeleine Cunningam, Ed Kaplan, Mady Hornig, Rosario Trifiletti. Parent reports by Diana Pohlman and Beth Maloney.

 

Registration for this conference is now open. Information, including the registration from, conference fees, CME accreditation, program schedule, and hotel information, can be found in the symposium brochure. We encourage parents to pass this information onto their physicians and to consider attending it themselves.

 

Direct link to symposium brochure:

 

http://www.bio.uci.edu/events/docs/PANDASevent.pdf

 

IOCDF Conference 2012 Summary Notes of Lectures by Swedo, Murphy, Latimer and others

 

 

Doctors were much more candid about what they are seeing in PANDAS treatment. Swedo thanked the parents again for rallying together to support her research findings.

 

Noteworthy comments by doctors include:

  • In new onset cases - minimum of 4 to 5 weeks antibiotics should be given at onset of illness to calm symptoms.

  • New cases presenting with asymptomatic strep have increased.

  • Allergies and stomach issues can be present with exacerbations - H1 and H2 blockers are calming symptoms. Dysbiosis (gut issues) recently highlighted in publications NATURE and JAMA show correlation to receptors in the tummy and increased anxiety.
  • Short-term Ibuprofen during exacerbations can calm symptoms.

  • Supplements that are beneficial: Omega 3's, Vitamin D, probiotics

These summary notes are made by Diana Pohlman and Vickie Blavat, parent volunteers attending the PANDAS lectures at the recent IOCDF Conference and are now available at PANDASnetwork.org! You will see some overlaps in the summaries, but also each post offers unique information as well. Please be sure to read all that is available! If other parents have notes you feel we should - please contact us. Summaries will be archived under Helpful Sites and References

for future referral.

 

 

Dr. Madeleine Cunningham's

Moleculera Labs Update 

   

   

 

BIG NEWS for PANDAS-PANS families to more accurately secure an accurate diagnosis and treatment.

  

Moleculera Labs plans to be open no later than early 2013!! This will be a commercial test that measures CamKinase II and autoantibodies often found in Sydenham Chorea and PANDAS-PANS and Tourettes patients. The tests will be covered by insurance and CLIA certified (a federal requirement indicating reliability of laboratory test).

 

 

Many families who were part of her initial research group (2009-2010) were able to secure PANDAS treatment by immunologists and neurologists with this diagnostic tool.

 

 

 

 

 

Omission of Conflicts of Interest

 by Critics of PANDAS in 2012

 "Moving from PANDAS to CANS"

 

 

Critics of PANDAS published a paper against prompt treatment for children in January 2012. At that time they did not disclose their affiliations with pharmaceutical companies like Psyadon - who develop tic suppression drugs. The "Journal of Pediatrics" has issued a correction for the undeclared disclosures. 

 

PANDAS Network.org's summary and parent editorial for this controversial paper was sent out in the  January newsletter. 

  

 

 

 

IVIG STUDY (NIMH & YALE) Update

 

 

There are currently 25 enrolled children. 7 more new onset PANDAS cases are needed. The results thus far are very good and there will be interesting findings for doctors. This is great news because many doctors will be looking carefully at the results of the study.

 

 

To find out more information on the IVIG study and to see if your child is eligible to participate, visit: http://clinicaltrialsfeeds.org/clinical-trials/show/NCT01281969.  

 

 

 Wishing you a happy fall season

 and successful school year!

 

Diana Pohlman and Vickie Blavat

PANDASnetwork.org

 

In This Issue
Handouts
Conference Registration
IOCDF Summaries
Moleculera Labs Update
Omission of Conflicts of Interest by Critics in CANS Paper
IVIG Study Update
Quick Links

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