By Teresa Conrick
Thank you to Netflix for seeing the importance of the film, Brain on Fire , and making it available for us. I wrote about this groundbreaking book six years ago:
By Teresa Conrick
I just finished Susannah Cahalan's superb book, BRAIN ON FIRE - MY MONTH OF MADNESS, chronicling her bizarre and frightening trip into, and then out of the disease, Anti-NMDA Receptor Encephalitis. I have been writing about Anti-NMDA Receptor Encephalitis for the past two years, as it seemed to me, to have connections to my daughter's Autism diagnosis. Megan had, these past years, exhibited odd seizures, strange movements with vocal tics and aggression. Testing did not show antibodies to NMDA receptors but did show antibodies to GAD65, though the two appear connected. …….
I think that PANDAS, another immune system illness, is also part of this increasing landscape. I am hopeful that we have some more supporters in the paradigm shift, that these illnesses that present as neuropsychiatric, really have their roots in the immune system.
Like a montage of pages falling from a calendar, researchers have listened and the reality of autism for many, with roots in the immune system, is finally under a bright spotlight. Follow this research as each study contributes to our understanding:
Autoimmune encephalopathies in children, 2014 .....over the last few years it has also become apparent that a much wider range of previously unexplained problems in children may have an autoimmune basis and might be treatable….Recognized triggers include infection or immunization. Some conditions are now more clearly proved to be autoimmune, due mainly to advances in antibody assay methodology…...Cases of suspected encephalitis lethargica are now recognized to be forms of anti‐NMDA antibody, and more recently anti‐dopamine 2 receptor antibody‐mediated encephalitis.3 Some acute or subacute epileptic syndromes are strongly suspected to have an autoimmune basis.4 That narcolepsy might be immune mediated is supported by the association with HLA DQ B1*0602 and more recently with a specific influenza immunisation.5 A wide variety of other syndromes such as Rasmussen encephalitis, acute epileptic encephalopathy with multiple acronyms (FIRES, DESC etc.), Tourette syndrome, PANDAS, Klein‐Levin syndrome, or childhood disintegrative disorder, some of which have long been suspected to have a possible immune mediated pathology, are being reviewed. There are even hints that features suggesting autistic regression may occasionally be immune mediated.....The importance of promptly recognizing autoimmune causes is not just that of diagnostic accuracy, and avoiding unnecessary investigations or treatment, but that many respond to a variety of immunosuppressive regimens such as steroids, drugs like azathioprine, intravenous immunoglobulin, plasma exchange, and some monoclonal antibodies. Not all children respond and those that do may not recover fully, while others may remit spontaneously, but there is also emerging data that early treatment may lead to a better outcome. Actively considering these treatable conditions is now essential in children with many different presentations.
Strong inflammation states are associated with ASD. This inflammatory condition is often linked to immune system dysfunction. Several cell types are enrolled to trigger and sustain these processes. Neuro-inflammation and neuro-immune abnormalities have now been established in ASD as key factors in its development and maintenance…...The immunodeficiency and the autoimmunity in ASD patients have been proposed as the rationale for the use of intravenous immunoglobulin (IVIG) infusion as a therapeutic tool for ASD…..Corticosteroid therapy has also been proposed in ASD management. A single case reported improvement in speech and behavior after oral prednisolone therapy in an autistic child with autoimmune lymphoproliferative syndrome.
Conclusions Our study outlines the common clinical and paraclinical features of children and adolescents with probable autoimmune encephalopathies. These patients, irrespective of positivity for the known antibody targets, appeared to benefit from immunotherapies and further antibody targets may be defined in the future.
Utility of Plasmapheresis in Autoimmune-Mediated Encephalopathy in Children: Potentials and Challenges, 2016
Children with immune-mediated encephalopathies represent a uniquely different group among patients presenting to intensive care units or neurological services worldwide. Arriving at a final diagnosis is not an easy task for treating physicians. It is very crucial to consider early use of first-line immunotherapy modalities, save those children’s lives and improve outcomes….In this relatively large epidemiological study almost 1500 patients (adults and children) have been involved. In this cohort, confirmed or strongly suspected etiologies were found in only one-third of the study population, while nearly two-thirds have remained with unknown etiology...Agrawal and his group have also reported a successful treatment of a young two-year-old child with post-vaccination anti-NMDA AIE after long period of prior treatment-resistance . This recently reported child had twenty cycles of plasmapheresis after four months of illness in combination with immunosuppressant therapy with Mycophenolate, with ultimate good outcome and satisfying developmental catch-up.
Amazing but also heartbreaking, as most parents who have seen their child regress after vaccination, could not get doctors to help them at this critical time period. The immune system has been ignored in pediatric doctor offices for too long. Children have suffered. Meg still does at age 25. We must keep pushing for proper medical work-ups. We gratefully acknowledge all of the researchers and doctors who are helping to right these wrongs.
This is from some of my favorite researchers -- HOT OFF THE PRESS --
The identification of brain-targeted autoantibodies in children with autism spectrum disorder (ASD) raises the possibility of autoimmune encephalopathy (AIE). Intravenous immunoglobulin (IVIG) is effective for AIE and for some children with ASD. Here, we present the largest case series of children with ASD treated with IVIG…..Overall, our open-label case series provides support for the possibility that some children with ASD may benefit from IVIG.
Awesome research and wonderful to finally see more of it. Stay tuned for Part 2 as we examine the MICROBIOME and if it is associated with any of this.