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Brain on Fire in Autism

Brain on fireBy 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:

BRAIN ON FIRE - From Autoimmunity To Madness

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 antiNMDA antibody, and more recently antidopamine 2 receptor antibodymediated 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, KleinLevin 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.

Inflammation and Neuro-Immune Dysregulations in Autism Spectrum Disorders, June 2018

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.

Paediatric autoimmune encephalopathies: clinical features, laboratory investigations and outcomes in patients with or without antibodies to known central nervous system autoantigens, 2012

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 [32]. 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 --

Intravenous immunoglobulin for the treatment of autoimmune encephalopathy in children with autism, August 10, 2018  

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.


 

Comments

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Montana NAR

Bob Moffit

Great comment: "...it is the psychiatric profession that routinely REJECTS any research indicating that a 'mental illness' can be an autoimmune reaction..."

I think 99+% of mental illness is biochemical, caused by infectious, hormonal, heavy metal or other chemical contamination, and does not arise from the subconscious or unconscious mind.

This psychiatric hooey leaves millions wallowing for help, for a cure. This notion that mental illness is somehow created within the mind puts the responsibility on the patient to recover... and that the illness is the "patient's fault."

It's a pathological problem on the part of the psychiatry and psychology to not recognize the true causes of mental illness.

Benedetta

It is a great book, going to get the movie.

bob moffit

@ go Trump

"I am sure there are dozens in mental institutions who could have been saved from this disaster. There are still many doctors who refuse to believe this is an actual affliction."

There is what appears to be an almost 'throw away line" in the movie "Brain on Fire" .. when someone expresses the exact same thought .. paraphrasing here .. "there must be thousands upon thousands over the years who have been shut away in psychiatric hospitals when their mental problems were caused by inflammation of their brains due to some type of infection which went UNRECOGNIZED and therefore UNTREATED.

@ Annie

"The scientific reality of what is being injected into infants is being held hostage by the vaccine industry."

I agree the vaccine industry has thrived precisely because they have "indoctrinated" the "scientific community" to believe whatever is "injected" into an infant is "safe" .. because it is in a vaccine.

Unfortunately .. historically .. it is the psychiatric profession that routinely REJECTS any research indicating that a "mental illness" can be an autoimmune reaction causing inflammation to the brain .. as the symptoms of the "mental illness" qualify as for a "diagnosis" THEY are professionally qualified to treat.

Recent 20/20 on PANDAS .. described by Wikileaks:

"Pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections (PANDAS) is a hypothesis that there exists a subset of children with rapid onset of obsessive-compulsive disorder (OCD) or tic disorders and these symptoms are caused by group A beta-hemolytic streptococcal (GABHS) infections."

The program explored the strong .. aggressively negative reaction by the psychiatry profession .. to the medical doctors who are courageously .. desperately trying .. with some success .. to treat the various .. severe neurological symptoms .. as an autoimmune disease rather than purely a neurological disorder.

annie

The scientific reality of what is being injected into infants is being held hostage by the vaccine industry. That is unconscionable! As Dr Mikovitz has said."It's time to give science back to the scientists"!

go Trump

We don't seem to have a lot of time for Netflix, but we did watch this movie. It was very well done.

I am sure there are dozens in mental institutions who could have been saved from this disaster. There are still many doctors who refuse to believe this is an actual affliction.

Jeannette Bishop

A couple of OT links I wanted share:

The DOH is being sued for the first time in NJ (and reportedly any other state) according to this:
https://brightonpediatrics.net/letter-from-dr-dana-sless-brighton-pediatrics/

Dr. Brian Hooker evaluates another fatally flawed vaccine-autism (Tdap in pregnancy) study:
https://worldmercuryproject.org/news/study-claims-tdap-vaccine-in-pregnancy-doesnt-cause-autism-is-that-true-given-the-facts/

Jeannette Bishop

Thank you! Looking forward to part 2 as well!

Beleaguered Autism Mom

I read Brain on Fire a couple of years ago and I was so hopeful that it would make physicians more aware of encephalopathy in some people with autism. The author's great fortune was finding a doctor that was willing to do a spinal tap to diagnose and provide the appropriate treatment, which cost $1 million. It comes down to who pays. It will cost more than $1 million during my son's lifetime - most of the cost will come from social security when he turns 18 next year, which comes from the working class. The next largest expense comes from the public school system - funded by taxpayers. Health insurance investors get off cheap if all they have to do is fund a few speech therapists, until the parents realize you can't talk your son out of being autistic.

Grace Green

Thank you for this amazing article - it makes everything fall into place.
It's long been known that Myalgic Encaphalomyelitis, which Andrew Wakefield has described as adult-onset autism, usually follows an infection. When I got my diagnosis, my GP, who was better qualified than most, told me it was an immune condition. I wondered even then, twenty years ago, whether "infection" could include vaccines, especially when I later discovered I had been suffering from autistic symptoms for as long as I could remember. Infections are known to make the symptoms of M. E. worse, so it's impossible to know if that's when one's illness started.
On a possibly related note, sadly one of the Queen's homeopathic doctors was knocked off his bike and killed in London yesterday. It was reported he worked at the Royal London Hospital of Integrative Medicine, so I DuckDuckWent the place and found they treat "chronic fatigue syndrome", which they classify as an infectious disease! Seems some practitioners are already there!

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