A 7 page commentary against the recommended treatment of PANDAS-PANS children was published in the Journal of Pediatrics (May 21, 2018). 

WE NEED YOUR HELP! OUR DOCTORS NEED OUR SUPPORT !

The three relentless critics of PANDAS-PANS (Drs. Gilbert, Singer & Mink) have written a commentary published in The Journal of Pediatrics paper attempting to discredit the value of the JCAP Diagnostic and Treatment guidelines for our children. We are asking you to write a brief (page or less) Letter to the Editor explaining the value of diagnosis and treatment of the child or children in your life. Let us share with them the VALUE OF TREATMENT as well as the hardship of finding help. They don’t know the wonderful hope we see in healing or they would not be so hard hearted in this commentary.

The courageous Consortium and Dr. Swedo are drafting a reply to correct this commentary's misstatement of current research (either made intentionally or thru ignorance) and evidence of autoimmune findings in our children.

PLEASE SEND Your Letter to [email protected] and we will compile all of them to accompany the Consortium reply.  DEADLINE TO PNETWORK July 20 ^th , Friday.

If you prefer to send it to the Editor directly: Dr. William Balistreri, [email protected] – ( Sample Letter Here )

Below find:

Excerpts from the Paper

A Link to Download Free of Charge the paper for 24 hours

A link to Purchase the Paper for $35

Medical Ethics : The standard of care in medicine is to dialogue, not destroy the observations and anecdotal reports of healing where medicine is in discovery mode and is saving lives! Where a consortium of doctors has carefully articulated their expert observations, it is expected that dialogue, not the dismantling of expert opinion, is the ethical standard. This commentary shows a lack of curiosity into the growing field of neuroscience and the urgent search for evidence of antibodies in autoimmune encephalitis (AE) where psychiatric onset is often the first clue to needed treatment. Nor is there curiosity about the consequences of not treating or following the children through to healing. The paper leads to NO Spirit of Inquiry or Curiosity about simple findings that might save a child for a lifetime.

Nonetheless Parents We are Brave ! Great Breaking News! parents are pushing forward and more doctors are treating.  Yesterday, a 2 ^nd state passed insurance coverage mandate for our kids, THANK YOU, Delaware mom, Duzan Family, who passed HB 286. This is the second state following the tremendous efforts of Wendy Nawara and others in Illinois mandating insurance coverage. 

READ BELOW EXCERPTS FROM THE PAPER

A Pediatric Neurology Perspective on Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infection and Pediatric Acute-Onset Neuropsychiatric Syndrome (Journal of Pediatrics, May 21, 2018) Drs Gilbert, Mink, and Singer

https://www.jpeds.com/article/S0022-3476(18)30589-4/abstract

VIEW IT for 24 HOURS or purchase:  $35.95 USD|PDF Download and 24 Hours Online Access

Diagnosis: Medical Diagnostic Evaluations for PANDAS and PANS

In summary, published PANDAS data show that streptococcal cultures, antistreptococcal antibodies, and antibrain antibodies have a high potential to mislead both clinicians and parents .

AND

Diagnostic testing for suspected PANS in children presenting with OCD and/or severe food restriction remains more ambiguous, recognizing that unlike PANDAS, the definition of PANS does not include a specified trigger. To date, there is no significant evidence supporting any particular etiologies for PANS. As a corollary, there is no specific medical diagnostic testing for PANS.

Conclusion: We have been personally involved in the evaluation and care of many children with suspected PANDAS or PANS and, thus, can attest to the high level of concern in parents and suffering and impairment for both the affected child and their families.

Nevertheless, based on the facts discussed in this article, there remains a pressing need to define better the clinical manifestations, laboratory and neuroimaging findings, therapeutic responses, and clinical course in these disorders. Wherever possible, such investigations should reduce or eliminate reliance on reports of parents and use blinded researchers . We are especially concerned about unsubstantiated reports from clinical researchers who have concluded , despite the lack of rigorous human studies, that there is a prominent role for inflammation in cases with fulminant, severe, disabling psychiatric-only presentations. This assumption often leads to overuse of antibiotics and unwarranted exposure of children to powerful immunomodulatory agents.

In conclusion, diagnostic testing should be systematic and non-validated immune modulating treatments should be considered only in cases with coexisting neurologic signs/symptoms or in extremely severe cases with psychiatric-only symptoms, and after expert consultation.

*PANDAS NETWORK notes here that the Editor of the Journal of Pediatrics, Dr. William Balistreri and Dr. Don Gilbert (first author of this commentary) work together at Children’s Hospital Cincinnati.