New study further supports benefits of IVIG treatment in PANS patients.

Recent findings from a soon-to-be-published study point to the use of IVIG in the treatment of our patients suffering with Pediatric Acute-onset Neuropsychiatric Syndrome (PANS). This open-label pilot study cited a statistically significant decrease in related symptoms after six infusions of IVIG (Octagam 5%). ​

Equally important is the duration of response; authors stated that the significant difference is this study’s extended dosing strategy demonstrates the “durability of effects up to 46 weeks following the final infusion.”1 A total dose of 1g/kg every three weeks was administered for a total of six infusions.  
 
Dr. Maeve O’Connor, part of the investigation team, had presented results at a poster session during the 2019 American Academy of Pediatrics (AAP) conference. The open-label, multisite pilot study included 21 PANS patients, male and female, between the ages of four and 16. Here as well, all of the studied psychometric endpoints indicated statistically significant decreases in patient symptoms following six infusions of IVIG and the same durability of response for up to 46 weeks following administration in a subset of subjects. While this study did not include a control group and the sample size was relatively small, these findings do add more to growing body of evidence that IVIG can be a critical component in a comprehensive protocol for PANS and PANDAS/basal ganglia encephalitis, all of which are a subset of autoimmune encephalitis.
 
I believe the schedule of dosing every three weeks was advantageous because the half-life of IVIG Is about 21 days… we know the lower dose is often better tolerated and we can clearly see that it is also extremely effective.
 
Promising treatments to which all patients should be entitled.
 
These are just some of the findings that not only show the validity of IVIG, but also strongly supports the need for this treatment to be covered by patients’ respective insurers. While in some instances, approval for one treatment may be granted, we know that a single administration is not going to work in these disorders. Liken this to many other types of treatments that require more than just one dose to reflect improvement in other conditions, nor do we expect taking one vitamin tablet to address a nutritional deficiency, for example. It’s the same principle and school of thought that we have to employ in recommending and pursuing coverage of IVIG treatment. As ongoing research continues to mount in favor of this safe and effective therapy, we hope that more and more states in our country will endeavor to give our patients and their families the help and the opportunities to heal that they so desperately need. 
 
In health and hope,
Dr. Suzanne Gazda
 
Learn more at:
https://www.suzannegazdamd.com/blog/new-research-moves-pans-and-pandas-out-of-the-shadows-of-mental-illness
 
https://www.suzannegazdamd.com/blog/in-the-news-exciting-research-findings-about-to-ae-pans-and-pandas
 
References:
 
1 Melamed, I., Kobayashi, R.H., O’Connor, M., Kobayashi, A.L., Schechterman, A., Heffron, M. Miranda, H., Rashid, N. Evaluation of Intravenous Immunoglobulin in Pediatric Acute-Onset Neuropsychiatric Syndrome. J Child Adolesc Psychopharmacol. 2021 Feb 18. doi: 10.1089/cap.2020.0100. Epub ahead of print. PMID: 33601937.
 
https://www.suzannegazdamd.com/blog/new-research-moves-pans-and-pandas-out-of-the-shadows-of-mental-illness