Dear Families,

Please read these studies from Denmark and South Africa carefully!  These papers for the first time show evidence of PANDAS-PANS in large populations. Pushing for treatment will not be solved by these papers but it broadens the discussion worldwide and pushes the debate for compassionate treatment forward. Particularly, the South Africa paper points out that the illnesses of Sydenham and PANDAS are not "benign" and therefore treatment should not be ignored.

WHY DON’T OUR KIDS GET TREATMENT?  Part of the reason, is that Rheumatic Fever (RF) in the U.S. was largely wiped out in the 1950’s, however, it’s related sequela, Sydenham Chorea (SC) was considered a temporary, self-limiting six-month illness 60% of the time, according to SC expert Dr. Madeleine Cunningham.  Chronic SC sufferers are estimated at 40%.  Treatment protocols to ensure permanent remission have not been done in double blind studies which is the U.S. standard. And, the recent NIMH-Yale IVIG trial left room for debate. Swedo was looking at SC in the 1980's and from here developed the PANDAS hypothesis. Only two scientists who do Basic Science have persisted looking at the way strep affects the brain-- Dr. Madeleine Cunningham (U of OK) and Dr. Dritan Agalliu (Columbia U) both of whom have clearly shown that Group A strep affects behavior in mice and creating a distinct and 'rogue" autoimmune response.   More research money must be raised to now replicate their important findings in humans. 

Interest in Strep in the U.S. is not high, outside of our PANDAS-PANS community.  SC is largely a Third World disease and, I believe, this is why dollars and interest are low. However, PANDAS now being identified worldwide opens the demand for research. It should!!! Please read these two papers. DENMARK (a developed country) has done us a great service.  AFRICA (a third world nation) has also points out there are many millions of neglected children...many of whom have SC…and guess what…PANDAS.  PN is working on finding a way to create world surveillance of SC and PANDAS – it is time.

  Sincerely, Diana Pohlman (Founder & Exec. Dir., PN)

Association of Streptococcal Throat Infection With
Mental Disorders
Testing Key Aspects of the PANDAS Hypothesis in a Nationwide Study ( JAMA, May 24, 2017)

Thank you to the organized national health registry of Denmark!  This is the first meta-analysis of 1 million children born in Denmark.  It conclusively shows that strep throat infections, particularly multiple strep infections, increases the risk of OCD or Tics in children 18 years and younger.  They were not able to study the broader range of PANS symptoms and don't clarify if these were acute cases nor do they explain the course of the illness.  But the strep connection is made.

Denmark, also shows that viral or non-strep throat infections also showed increases of OCD/Tics and mental health disorders. This speaks to the PANS hypothesis, but again, they do not in this paper analyze the course of the illness or treatment.

PN’s statistic of 1 in 200 children is albeit conservative but based on the many ambiguities of tracking the children in this registry we won’t adjust that number – though it is likely higher especially if PANS is included.

This is an entirely new field of medicine.  Phew.  We need research $$ and fast.

Sydenham Chorea and PANDAS in South Africa: Review of Evidence and Recommendations for Management in Resource-Poor Countries. 
(J Child Neuro June 30 2015)

SC is the bastard child of RF and there is no international surveillance of this illness or PANDAS.  And in SC, as well, no treatment ever universally decided on.  SC is often self-limiting within six months however 40% of the time children have issues for a lifetime. SC is considered the #1 cause of acquired neuropsychiatric illness.  Below are a few excerpts that are bombshells and imply action is needed by world health organizations.  

Dr. Katherine Walker had (she has retired recently) a surveillance center for Rheumatic Fever in Cape Town, South Africa.  She estimated 15 million worldwide have RF.  In the first report ever of someone “boots on the ground with SC and RF,"  Walker states that in the Third World (which is much larger than the U.S. population), “We recommend that the diagnosis and monitoring of these 2 conditions not be differentiated at primary health care levels. Given the high prevalence of rheumatic heart disease, an approach that includes Sydenham chorea and PANDAS as being on the same spectrum, under the umbrella of post-streptococcal neuropsychiatric movement disorders, may provide a safety net that avoids missed diagnoses” (page 852).

And, “Despite more than 3 centuries of experience [with Sydenham], no expert consensus guideline has been established using current methods of guideline formulation" (page 857).

The take away from this is – research money and particularly, in Basic Research to prove and find the mechanisms are crucial or the clinical debates will rage on.
PN is working on creating collaborative fundraising efforts with our Community Partners for each region and potential Center of Excellence in the U.S. and we will share with you dollars and cents needed to move this debate forward.

We must persist.