Patients with AE who have had psychiatric episodes may or have been landed in a psychiatric institution.
This is due to the lack of knowledge among medical professionals and can harm a patient with AE for many reasons.
This is one major reason why HESA and other autoimmune encephalopathy/encephalitis
organizations work tirelessly to advocate and spread awareness among the medical communities and patient/caregivers to prevent this.
Why Being In A Psychiatric Institution Can Harm A Patient With Autoimmune Encephalitis
Not recognizing that many of these patients have no prior psychiatric issues
Patients also have neurological or physical symptoms
Institutionalization causes delay in receiving life saving immune suppressant treatments
Pumping a patient full of anti-psychotics causing harm to a brain that is already inflamed by encephalitis.
OUR HOPE IS THAT PSYCHIATRIC FACILITIES WILL BECOME WELL VERSED IN THE DIAGNOSIS AND TREATMENT OF PATIENTS WITH AUTOIMMUNE ENCEPHALITIS
Two examples of research in this area and there are many others (more)
Research by Dr. Jerome Honnorat et al., 2016
"Psychiatric presentation is heterogeneous with grandiose and paranoid delusions, hallucinations (visual and auditory), bizarre behavior, agitation, fear, insomnia, confusion, and short-term memory loss. These manifestations are generally considered as acute psychosis, mania (with psychotic features), or onset of schizophrenia. This period of the disease can be associated or not with major or discreet neurological signs, leading to an initial consultation in psychiatric institutions. If neurological signs, such as dystonia, oro-lingual-facial dyskinesias, or seizures are present, they should lead to a search for autoantibodies. Lejuste et al.,found that half of the patients with psychiatric presentation were patients with prior discrete neurologic symptoms that did not lead to further investigations (magnetic resonance imaging [MRI], CSF analysis) and were thus misdiagnosed. Autonomic manifestations such as hyperthermia and/or tachycardia are also frequent. Even if it is rare, some patients will not present any neurological symptoms during the disease (first episode and possible relapses). These patients present no particularities (fulfilled criteria for schizophrenia according to Diagnostic and Statistical Manual of Mental Disorders, fourth edition) and respond to classical immunomodulatory treatment but are difficult to diagnose."
Other research by Dr. Jerome Honnorat et al., 2018
Autoimmune encephalitis and psychiatric disorders:
"As psychiatric symptoms may predominate at the onset or over the course of these diseases, the diagnosis is frequently delayed. Yet, patients' prognoses depend on the speed with which the disease is detected, identified and managed. "A wide range of neuropsychiatric symptoms is observed according to the patient's AE subgroup, and some are highly suggestive of an immune origin and should be recognized as such by physicians. Because the presence of pronounced psychiatric symptoms drives patients to psychiatric institutions, which can hinder the diagnosis, physicians need to be aware of AE and propose the detection of autoantibodies as early as possible to provide optimal medical care to such patients. In fact, the description of AE sub groups over the past decade has allowed the present overview of their incidence in psychiatric diseases and some general guidelines for the management of these patients."
**note: although we all know HE has no known antibodies to test for (like NMDAR for example) other than high anti thyroid antibodies- this still applies to us as it refers to autoimmune encephalitis.**
What to do when a loved one diagnosed with an AE gets involuntarily institutionalized.
*This is not legal or professional advice but suggestions by those who have experienced this type of situation:
1. Get an attorney.
2. Call the Register of Probate for the county where he/she is committed to the psych hospital. This is the agency that gets petitioned for involuntary commitments to psych hospital.
Ask the register of probate what can be done when a patient/this patient/any patient gets involuntarily committed to a psych hospital but NEEDS MEDICAL CARE.
Ask what steps can be taken to petition him/her to get medical treatment.
Ask how to petition to transfer him/her to a medical hospital.
3. If you need more help and cant get answers, ask to speak to the Court Counsel (this is the attorney who pursued the psychiatric hospital commitment). This person likely thought this person needed help and tried to get him help without understanding everything. Explain the case to this attorney who was already involved to see if they can recommend what to do or what they can do to get this patient transferred to a medical hospital instead of a psychiatric hospital where they cannot get adequate care.