Susannah vividly takes us along her journey from healthy twenty-four-year-old
to seizures, hallucinations and entrance into the land of psychosis, with a
very possible one-way ticket, to the end of the line. With loving parents
and two brilliant neurologists, Josep Dalmau, M.D. and Souhel Najjar.M.D,
throwing her a lifeline, Susannah ascends from Dante's hell from the immune
treatments targeted at reversing the disease. It is a read that will keep
you moving from page to page voraciously as you see the monster coming and want
to see how it is ultimately killed. It truly seemed like a miracle as it
is a horrific disease, seemingly on the increase
and some don't make it out with one hundred percent of themselves, and some
don't make it out at all.
Like daffodils in the early days of spring, my neurons were resprouting
receptors as the winter of the illness ebbed.
Susannah Cahalan p197
I want to thank Susannah for sharing her story and making the plea that
so many cases are going unnoticed -- "How many children throughout
history have been exorcised and then left to die when they did not improve? How
many people are currently in psychiatric wards and nursing homes denied the
relatively simple cure of steroids and immune therapy treatments that brought
me back from the brink?"
She also brings up Autism and autoimmunity
Two particular fields of study, schizophrenia and autism, will likely gain
the most from this landscaping of the elephant. Dr. Balice-Gordon [Dr.
Dalmau's colleague] believes that a percentage, albeit a small one, of those
diagnosed with autism and schizophrenia might in fact have an autoimmune
disease. Many children ultimately diagnosed with anti-NMDA autoimmune
encephalitis were first determined to be autistic. How many children
originally first diagnosed with autism weren't able to find their autoimmune
diagnosis? p 224
My daughter, Megan, may be one of those children and I know that she is not
alone. Some common denominators that I have written about regarding
Autism seem to have a possible connection to Susannah's story --- infections,
hormones and cancer, with a specific focus on Melanoma. I have discussed
as some families seem to have a vulnerability to both Autism and Melanoma and
how that may be, as they related to glutamate signalling .
Owning a cat, something Susannah also did, seems to put people at a higher risk
due to infection with Toxoplasma gondii, a parasite. Susannah
had a history of Melanoma, had recently been on hormones via birth control and
there was the possibility of a bug bite [bedbug], too, all clues into
causation. Hormones seemed to be a trigger for Megan' s symptoms, as
well. Susannah, in her book, further describes the changing landscape of
Dr. Najjar, for one, is taking the link between autoimmune diseases and
mental illnesses one step further through his cutting-edge research, he posits
that some forms of schizophrenia, bipolar disorder, obsessive-compulsive
disorder, and depression are actually caused by inflammatory conditions in the
Dr. Najjar is in the midst of groundbreaking work that might finally sever the
barrier separating immunology, neurology, and psychiatry. A recent case
of his centers on a nineteen-year-old woman who had been diagnosed with
schizophrenia by six leading psychiatrists over the course of two years.....Her
parents did not believe the schizophrenia diagnosis and eventually made their way
to New York University, where they met with Dr. Najjar. He ordered a
right frontal brain biopsy--something he had learned from my case--that showed
the presence of inflammation and antibodies targeting the glutamate receptors
in the brain. She was treated with steroids, plasma exchange, and IVIG
treatment, which helped with the hallucinations and paranoia, but because the
treatment was started so late, it is unclear if she ever will return to her
"Just because it seems like schizophrenia doesn't mean that it
is," Dr, Najjar told me. "We have to keep humble and keep
our eyes open." p225
Glutamic acid decarboxylase (GAD) is the rate-limiting enzyme converting
glutamate into γ-aminobutyric acid. Impaired GAD function can alter motor,
cognitive, and behavioral function. Anti-GAD antibodies (GADAbs) can cause
several neurological disorders. However, the association between anti-GADAbs
and pure psychosis, without seizures or focal neurological deficits, is not
A 19-year-old woman with recent-onset psychotic disorder was diagnosed with
schizophrenia. Brain magnetic resonance imaging and cerebrospinal fluid
analysis Serum anti-GADAb titers
Brain biopsy showed subcortical gliosis and microglia-macrophage infiltration.
The clinical syndrome improved with immune therapy.
Severe psychosis and mild cognitive decline without other neurological
features, meeting the Diagnostic and Statistical Manual of Mental Disorders,
4th edition, text revision diagnostic criteria for schizophrenia, can result
from brain inflammation associated with elevated serum anti-GADAbs.
Since my daughter's labs show a similar pattern with antibodies against
glutamic acid decarboxylase 65 (GAD65), I am hoping we can have these
honorable, brilliant doctors join us in helping our very ill children and see
them in their true light -- as children stricken with immune and
autoimmune illness and disease -- needing proper testing and
treatments. It has been almost seventy years since Dr. Leo Kanner and the
field of Psychiatry took Autism under lock and key. It is finally time
for the truth to be known.
"Presence of GAD65 autoantibodies in the serum of children with autism
Antibodies against glutamic acid decarboxylase 65 (GAD65) have been detected
in the serum of patients with several neurological disorders. The presence of
antibodies against GAD65 has not yet been examined in the serum of patients
with neurodevelopmental disorders such as autism or
attention-deficit/hyperactivity disorder (ADHD). In this study, GAD65
antibodies and total IgG were assayed in the serum of normal subjects and
patients diagnosed with autism or ADHD. GAD65 antibodies were detected in the
serum of 15% of children with autism (N = 20), 27% of children with
ADHD (N = 15) and of none of the controls (N = 14). The
serum of 60% of autistic and 53% of ADHD patients reacted with Purkinje neurons
in mouse cerebellum. Serum from 20% of ADHD patients reacted also with the
cells in the molecular and granule cell layers and cells in the vicinity of the
Purkinje neurons. No association was found between the titer of GAD65 antibodies
and total IgG levels, and presence of seizures or mental retardation. None of
the ADHD patients were diagnosed with mental retardation. Serum anti-GAD65
antibodies may be a common marker of subgroups of patients with autism and
ADHD. Reactions of serum antibodies with the cells in the cerebellum in these
patients suggest direct effects on brain function. The subgroup of children
with autism and ADHD that tests positive for GAD65 antibodies needs further
characterization in a larger study."
How many thousands of children continue to be labeled "Autistic"
and are receiving no immune workup, no labs, no immune treatments and no hope
for recovery or for improvement in their quality of life ?
Teresa Conrick is Contributing Editor to Age of Autism.