So, why would we wait to employ the most effective means available to quickly tamp down immune dysregulation and subsequent inflammation that drives virtually every disorder including PANS and PANDAS?
PANS or pediatric acute-onset neuropsychiatric syndrome and PANDAS, pediatric autoimmune neuropsychiatric disorder associated with streptococcus infection, can occur when our immune system, in mistaking normal cells for infectious agents, essentially launches an attack on our own tissues. The resulting impacts, which may develop very swiftly, can include obsessive compulsive disorder (OCD), motor tics, behavioral changes, eating disorders, and many other serious and often life-changing symptoms. It’s important to note too that while many PANS and PANDAS patients are between the ages of 3 and 13 years, there are instances where children (and young adults) outside that range have been affected.1
But according to new data presented at the IgNS 2021 Conference “timely treatment with IV immunoglobulin (IVIG) therapy can help children who develop obsessive-compulsive disorder (OCD) and other severe psychiatric or neurologic symptoms in the aftermath of streptococcal or other infections.”
The key word here is TIMELY. And, as anyone involved in the care of PANS and PANDAS patients knows, there unfortunately can be significant delays in not only getting an accurate diagnosis, but also obtaining appropriate treatment. The disorders are often mistaken for other illnesses or patients initially may be seen by practitioners who just aren’t as familiar with these very complex disorders. Subsequently, the right therapies that could potentially help ward off more serious complications may not be employed from the start and this ultimately exacerbates the disease progression.
A recent article discussed the IgNS 2021 conference findings and offered insight from several physicians and researchers at prominent universities and medical centers that clearly stress the need for expedited care. Dr. Sydney Rice, University of Arizona (UA)/Banner Health Children’s Postinfectious Autoimmune Encephalopathy (CPAE) Center of Excellence - Tucson, cited the promising results from the use of IVIG as shown by Stanford University researchers, something with which Dr. Michael Daines, MD, an associate professor of pediatric allergy and immunology at the UA College of Medicine and the other CPAE Center co-director, concurred.
Dr. Rice explained too that while the use of other therapies such as antibiotics and anti-inflammatories can help, they also may over-suppress the immune system. The multi-modality mechanisms of IVIG works to block the production of the antibodies that are at the root of the disorders, “so we use (it) in immunomodulatory doses to try to stop these antibodies from doing what they do.”
However, and something to which parents and clinicians can attest, getting IVIG approved by insurance providers is no easy task. The current costs for these treatments exceeds the costs for generic antibiotics or traditional anti-inflammatory therapies so it can be a long-waged challenge to obtain approval for something so many patients desperately need…at the expense of their health and prognosis.
There is no single or simple solution, but the message is clear – the sooner we put the out the fire and provide the RIGHT treatment for those affected by PANS, PANDAS, and other related auto-encephalopathy conditions, the sooner we can hope to see improvement and resolution of symptoms.
The cost of delaying assessment and treatment is to our children’s futures – we must continue to work together toward making IVIG and other appropriate therapies more accessible and more quickly available!
In hope and healing,
Dr. Suzanne Gazda
To learn more about IVIG in PANS and PANDAS see:
For related resources and support groups, please see our Helpful Links section on our website.
You’ll also find numerous articles about PANS and PANDAS in our blog library; just use the Search tool on each page to locate more information by keyword and topic.
1 ASPIRE, Alliance to Solve PANS & Immune-Related Encephalopathies
Buckley, B. Pediatric OCD May Respond to Timely IG Therapy. Specialty Pharmacy Continuum® November 16, 2021. https://www.specialtypharmacycontinuum.com/Clinical/Article/11-21/Pediatric-OCD-May-Respond-to-Timely-IG-Therapy/65290
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Dr. Suzanne Gazda, Integrative Neurology