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The Dangers of Psychiatric Involuntary Commitment with Autoimmune Encephalitis Onset

The Dangers of Psychiatric Involuntary Commitment with Autoimmune Encephalitis Onset

The disease Autoimmune Encephalitis causes many neurological and psychiatric symptoms. To name a few: psychosis, depression, anxiety, balance problems, insomnia, visual hallucinations, aggression, agitation, delusions, memory loss, behavior changes (frequently bizarre), disorientation, confusion, problems talking, seizures, involuntary movements, distorted vision, weakness or numbness of part of the body, many of these symptoms are present for months and intermittently fluctuate.

Since many of these symptoms are also present with bipolar disorder or schizophrenia, and Autoimmune Encephalitis is a newly identified neurological set of disorders, many first-time medical responders such as emergency room personnel, psychiatrists and neurologists have never heard of these disorders or seen a case.  Given that psychiatric symptoms are usually the first and most prominent to present themselves in autoimmune encephalitis prior to more obvious neurological symptoms that are not seen in psychiatric disorders, patients with first time psychosis or other psychiatric symptoms are frequently misdiagnosed as a psychiatric case.  The patient is then detoured away from neurological evaluations and suspicions of central nervous system involvement and incorrectly admitted as a psychiatric patient.

This pitfall, due to lack of medical and public awareness of these disorders, puts the autoimmune encephalitis patient in danger of delayed diagnosis or worse: never being correctly diagnosed.  Autoimmune encephalitis is a highly treatable and reversible disease.  Timely diagnosis brings best outcomes and delays can result in permanent brain damage or a life threatening medical crisis with tragic consequences.

Involuntary commitment or civil commitment

Emergency involuntary institutionalization, (also known informally as sectioning or being sectioned in some jurisdictions, such as the United Kingdom), is a legal process through which an individual who is deemed by a qualified agent initiated by judges, law enforcement officials, physicians, or mental health professionals to have symptoms of severe mental disorder is court-ordered into treatment in a psychiatric facility or ward as an ‘inmate patient’. Involuntary examination can occur when there is evidence that the person:

1.  Possibly has a mental illness

2.  Is a harm to self, harm to others, or self-neglectful

Examinations may last up to 72 hours after a person is deemed medically stable.  Criteria for involuntary civil commitment are established by laws, which vary between nations. Commitment proceedings often follow a period of emergency hospitalization, during which an individual with acute psychiatric symptoms is confined for a relatively short duration (e.g. 72 hours) in a treatment facility for evaluation and stabilization by mental health professionals—who may then determine whether further civil commitment is appropriate or necessary. If civil commitment proceedings follow, then the evaluation is presented in a formal court hearing where testimony and other evidence may also be submitted. The subject of the hearing is typically entitled to legal counsel and may challenge a commitment order through habeas corpus rules.

Without medical treatment that addresses the cause of the patient’s symptoms, immune suppression for autoimmune encephalitis, the ‘inmate patient’ can not be stabilized for 72 hours and legal commitment court hearings commence. This tragic situation is further complicated by the fact that autoimmune encephalitis patients are anti-psychotic intolerant. Since many of the common medications given to treat bipolar disorder or schizophrenic patients are strong dopamine antagonists, the AE patient particularly anti-NMDAr encephalitis patients being neuroleptic intolerant, show: catatonia, rigidity, autonomic instability and altered level of consciousness after being administered these medications.  This outcome is an added ‘nail in the coffin’ to the now more certain possibility that the autoimmune encephalitis patient be sentenced to legal commitment.

It is important to note that once a patient is successfully diagnosed with autoimmune encephalitis, the danger of involuntary commitment to a psychiatric facility has not passed. As my wife’s caregiver, I have learned to be prepared in the event of her suddenly relapsing.  Prednisone historically successfully brings her back to base line with all psychiatric symptoms resolved within a very short period.

The need for an emergency prescription of 60 mg of prednisone became evident to me one memorable weekend.  My wife’s doctor was not in one day and I called and got a resident on the phone. I explained that she was in relapse and out of prednisone. She required an urgent refill to pull her out of her state and resolve her symptoms. The resident asked me to list her apparent presenting symptoms. I said, “Hallucinations, severe depression, balance issues and stupor.” 

The resident responded, “She takes prednisone for those symptoms?”

“Yes”, I reported.   “Prednisone has resolved all of her symptoms during several relapses.”  I realized he knew nothing about Autoimmune Encephalitis and began to feel the helplessness of being faced with a medical professional unfamiliar with her diagnosis so I said, “Look, call her doctor. He can explain to you why prednisolone works for her diagnosis. Right now, we need to get going on a refill!”  He said he would contact her regular doctor and call me right back. Five minutes later he called back to tell me the prescription was called in and ready for pick up. Lesson learned: always be ready for the relapse. The alternative of going to an emergency room and having her misdirected to psych was not an option I wanted to face in the mist of her medical crisis.

As a police officer with an associate degree in Police Science and Bachelors in both Administration of Justice and Sociology, I have had a lot of experience with administering civil commitments, incarceration on the psych ward.  To police officer’s it is known by the terminology ‘to Baker Act a civilian’.  While working in the department my routinely assigned patrol area was in the Ghetto between Milwaukee and Chicago. The Ghetto is the prime location for a police officer to acquire the most experience in any law enforcement department. In my work, it was common place to witness people with mental illness being shunned, talked down to, mistreated by family members or by members of the community who did not understand mental illness.

I still remember the 70-year-old woman who lived in constant fear because she was convinced three men who lived in her home would launch their attack some night soon and successfully slit her throat. I clearly recall a woman who was a survivor or Nazi Germany, asking me and my partner if we thought we could made it past the Germans outside who were gunning people down as they came and went from her home. She had survived war only to be forever psychologically traumatized by mentally reliving the terrors she had witnessed. This was no way for a person to live their life when help was available. Yet, involuntary commitment was the only way I could guarantee the help they needed was delivered in order for them to live their life to the fullest once more.

I did more civil commitments then any law enforcement officer in my 200-manned department. I acquired expert knowledge in civil commitment statutes in order to ensure that citizens received the best opportunity for a safe and improved quality of life by accessing the help and support they needed. Provisions under the statute included victims of drug and alcohol addictions. Some alcoholics or drug addicts are such a danger to themselves and others that they will literally consume lethal substance amounts or have such behavior change they are a danger to society. These citizens are subject to commitment under the statute.

My wife avoided commitment because I knew what to do to reverse the relapse, in her case it was 60 mg prednisone daily for 6 days. Unfortunately, many people with AE do not know that this treatment is documented in research covering treatment protocol for chronic maintenance addressing relapse. Many doctors have never heard of Autoimmune Encephalitis so they are equally unaware. In reading autopsy studies of AE patients, many had died because no one knew to give steroids in a relapse. Suicide, due to autoimmune depression, is also a common threat to the patient in a state of uncontrolled AE.  Insufficient awareness of autoimmune encephalitis continues to be responsible for legal commitments from misdiagnosis resulting in loss of life when an inexpensive treatment such as steroids can completely resolve the psychiatric presentation seen at onset or in relapse.

Placing a Patient on a Psych Hold can Lead to Long Term Legal Commitment

 

The usual course of action is a patient is placed on a 72-hour psych hold by a Judge based on a petition to the court made by a police officer or Doctor. Once this occurs, it is imperative that a family member or caregiver immediately hire an attorney versed in this area of law to represent the patient’s interests. The AE patient is now in the life-threatening situation of not receiving the medical treatment necessary and could find themselves legally committed jeopardizing their life and if they survive, their quality of life.  It is of the utmost importance that the danger this represents is understood by the patient’s family and that no delay for proper legal counsel occurs. If financial circumstances restrict you, going into credit card debit or selling what you can to acquire the legal funds should be considered to save your loved one’s life.

Once the Judge has approved the petition for a 72-hour psych hold, a court date is set for a hearing. An involuntary legal commitment can only be made by a Judge’s court order. Only a Judge can reverse the Judge’s order. The police or Doctor, who originally petitioned the court, can only petition the court to reverse the Judge’s order. The Judge who placed you on the psych hold is the only person who can give permission to arrange for you to be transferred to a medical hospital for a neurological work up. Therefore, if you do have a diagnosis and have been treated by an expert Neuro-immunologist in the past, they are not able to release you from a psych hold or prevent a court date from occurring as they did not place you on that hold and are not working at the facility where you are being held and are not overseeing your care. You are at the mercy of an attorney, their due diligence and research into your circumstances and the Judge in charge of hearing your case.

At this point, for the AE patient, expert testimony from a neurologist in the field of autoimmune neurology could prove to be invaluable.  However, this usually doesn’t happen. The Psychiatric medical community is used to looking at these cases not as a neurological condition but rather a psychiatric illness. Psychiatrists are convinced their diagnosis of bipolar disorder or schizophrenia is accurate and have a career in seeing the patient improve and stabilize with anti-psychotic dopamine antagonist medications. They are confident that their treatment will lead to their patient being stabilized. However, as previously discussed these treatments have a devastating effect on the AE patient. Once legally committed, often for a period of 6-month, that time usually needs to elapse before the case is heard again in court.  It is very hard to get around or get out of a commitment.   You can only be released by order of the Judge.

So, what can one do when psychiatric protocol is followed and a neurological protocol is ignored? The only option is to convince the judge that the patient is suffering from a neurological disorder and requires a full neurological evaluation to determine their diagnosis. In order to achieve this, an expert in the field of autoimmune encephalitis needs to be able to evaluate the patient to provide the medical evidence of the diagnosis. The Neuro-immunologist then needs to explain in court what medical treatments are needed. Warn against what subjecting the patient to psychiatric medications can do in worsening the patient’s condition and the ramifications of allowing the disease to progress unchecked. This needs to be accomplished to the Judge’s satisfaction while the Psychiatrist will be presenting their arguments for how they arrived at their psychiatric diagnosis and treatment plan.

As a patient advocate in the autoimmune encephalitis community, I have witnessed many preventable worse case scenarios.  I have witnessed cases where family felt making the financial sacrifice of hiring an experienced attorney specializing in civil commitment law was unnecessary and felt confident a court appointed attorney would suffice.  I have witnessed cases where a caregiver or family member felt they could speak in court for their loved one instead of a medical professional.  I have witnessed families feeling confident that they could advocate themselves out of the possibility of legal commitment either because they felt they knew their loved one so well or their medical condition or simply loved them so much that they truly felt nothing horrific would befall them.

Unfortunately, each time I have watched a family decide against expert legal counsel from the very first of hearing their family member has been placed on a psychiatric hold, I have had to watch the horrors unfold and a legal commitment occur. I lose sleep to this day over wondering what else I might have done or said to drive home the importance of acquiring immediate expert legal counsel when my mind drifts back to some of these cases. I lie awake sometimes wondering why my words of warning fell on silent ears. Simply stated: a lay person or court appointed attorney going up against a Psychiatrist with knowledge of protocol is a losing proposition. The attorney with good knowledge of civil commitment law working with an AE expert will usually win with the proper medical evidence in hand.

Yet, there is a better way to avoid all this heartache. Prepare in advance with family members for this relapsing remitting disease by having a plan in place when relapse occurs. In my wife’s case, her doctor has ordered 60 mg prednisone tablets orally with a prescribed titration when relapse occurs. Get a good diagnosis by an expert in AE so there is no doubt based on proper medical testing. Proper planning, if the medical condition is known after AE has onset, can avoid civil commitment and a subsequent financial and emotional hardship. Additionally, the AE patient should wear a medical ID bracelet, have their supporting medical documentation in a portable binder at home complete with MRI, EEG on discs if a prior diagnosis has occurred. Included should be all telephone contacts for their treating physician so they can be called by ER personnel.

And so, like the Thorn bird, a species known for its outstanding ability to sing, I write this blog with the hope that my warning song will be heard and a life saved.

Gene Desotell is a retired police officer with an Associate Degree in Police Science and Bachelors in both Administration of Justice and Sociology

ezgif 5 93c9805948f2 - The Dangers of Psychiatric Involuntary Commitment with Autoimmune Encephalitis Onset

International Autoimmune Encephalitis Society (IAES) is a Family/Patient centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey.

Driven by the knowledge that “Education is Power”, International Autoimmune Encephalitis Society manages an educational support group for patients diagnosed with Autoimmune Encephalitis and their loved ones, empowering them to be strong self-advocates and advocates that will lead them to best outcomes and recovery. We are the premiere organization leading in these vital roles.

 

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Fighting the Madness: Navigating Trauma

Fighting the Madness: Navigating Trauma

 

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Fighting the Madness: Autoimmune Depression

Fighting the Madness: Autoimmune Depression

June 21, 2017 | Tricia Rispoli, LMHC,

Autoimmune Encephalitis can be a devastating, life-altering diagnosis not only for patients themselves, but for their spouses, children, caregivers, and families. While there are many forms of AE, all AE patients have one thing in common; their own bodies have turned on them. Patients experience a host of symptoms, ranging from psychosis to autonomic dysfunction. The symptoms sometimes come on suddenly in the middle of the day, without warning; while others suffer silently for months. AE impacts people of all ages, gender, and race. There is no discrimination when your body is silently waging war on your once healthy brain. Like war, it’s very unlikely for a person with AE to walk away unaffected. Every single part of your life is impacted in some way. Most report loss of personality characteristics, careers, mobility, memory, cognitive function, spouses, family members, and friends. Patients spend weeks, months, and even years in hospitals or long term rehabilitation centers learning to function normally again. Treatments for AE can be harsh on the body; as many receive chemotherapy, steroids, and IVIG at rapid rates to help stop the body’s attack. Or be subjected to plasmapharesis where the body’s blood is filtered through a machine and the offending antibodies are removed. AE drains your energy, and sometimes your spirit. Sometimes life with AE feels impossible, especially when you are surrounded by people who don’t believe your disease is real, or that you “can’t possibly be sick, you look fine!” No one could possibly understand the great amount of energy it takes for AE patients to get out of bed in the morning, put on a smile, and fake it through the day. It may be true that most AE patients don’t look “sick” in the way we expect, and because of this I feel there is pressure for them to try and be as “normal” as possible. This constant pressure, lack of support or validation for how they are feeling, combined with the physical and emotional symptoms of this disease, leaves most suffering in silence with a host of emotional issues, such as depression, anxiety, PTSD, etc.

In the next few months, I will taking a look at different mental health issues as they pertain to Autoimmune Encephalitis. These posts are designed to provide support, and resources for AE patients and caregivers who may be one of the ones suffering in silence. I say suffer no more, because you are not alone!

Depression is a big scary word for most, because let’s face it, when we think about mental illness, we think “laying on the shrink’s couch,” or a big scary insane asylum. These perspectives are a direct result of fictional portrayals of mental health in movies, TV shows, and books. These portrayals are very wrong. Being depressed, or feeling depressive symptoms is not enough to land you in a hospitalized situation. The facts are, in 2016, over 14.6 million people in the US alone were diagnosed and treated for a depressive disorder. That’s about 6.5% of the population, and does not account for the number of people who were too afraid to speak up or seek help. Depression comes from a place of feeling hopeless or helpless. When things in your life spiral out of control, or you lose a sense of safety or control over a specific aspect of your life, it’s a very normal reaction to feel hopeless or helpless. In typical situations, emotionally healthy individuals are able to cope and deal with these changes, and many times are able to move past the inciting event without incidence. In a person whose emotional, physical, and cognitive wellbeing has been compromised, such as someone with AE, the ability to cope is not always there, as patients are inundated with treatments, fear, anxiety, and a loss of themselves. Never before has the support of family and friends been more important. Having a strong support system is very important to a the patient with AE, and crucial in their recovery.

Autoimmune Depression

One of the aspects of AE that is not discussed amongst AE patients is “autoimmune depression.” Most are focused on the more pressing symptoms of the disease, that this is often overlooked or dismissed. The symptoms of AE depression are a direct result of the attacking antibody focusing it’s attention on the limbic system, which is the most common area of the brain attacked in AE patients. A patient with AE depression can be emotionally stable and feel “fine” in one minute, and have suicidal ideation in the next. Sometimes the change in emotionality can occur suddenly, leaving patients feeling scared, confused, and out of control. These symptoms occur most times when the disease is uncontrolled, or when a patient is heading into a disease flare. Watching for these signs and having an emergency treatment plan in place with your neurologist is vital. Depression and suicidal ideation can be resolved with oral or IV steroids, and a taper which can reverse this state, bringing down brain inflammation and stopping the attacking antibodies from affecting the part of the brain that controls emotions. This means that AE depression is not a permanent state of feeling, and can almost always be resolved.

Atypical Depression

It’s important to note that AE depression is very different from Atypical Depression. AE depression hits suddenly, and can be mediated with disease treatment. Atypical Depression is not a symptom of AE disease, but a side effect of coping with the normal challenges that arise from living with a chronic, life-threatening illness. You will notice that some of the signs of depression are very similar to AE symptom presentation, so if your symptoms come on suddenly, and don’t resolve with typical coping skills, you need to seek out a professional evaluation from your doctor, and for AE patients this would be your treating Neurologist. It’s also important to note, that not every case of depression looks or feels the same. Depression does not have to look like “crying all the time,” or feeling “sad.” Here are some very common symptoms of Atypical Depression:

Atypical Depression can impact your mood: You may feel anxiety, apathy (lack of emotion), general discontent, guilt, hopelessness, loss of interest or pleasure in activities you once enjoyed, and mood swings that range from anger to sadness. For AE patients, these symptoms could be a direct result of disease progression and/or medication side effects.

Atypical Depression can impact your sleep: It may be difficult for you to fall asleep (insomnia), stay asleep (frequent waking), or you may feel tired/fatigued and sleep often (hypersomnia).

Atypical Depression can impact your whole body: You may feel excessively hungry, fatigue, loss of appetite, weight gain or loss, and a feeling of restlessness.

Atypical Depression can impact your behavior: You may feel very easily agitated, cry excessively, feel constantly irritable or easily frustrated. You may also withdraw from your friends and family, preferring to be alone, or feeling fatigued by spending time with others. For AE patients who suffer from seizures, it’s important to remember that some seizure types can present with extreme emotionality such as sudden crying or laughing. This is why consulting you’re your Neurologist first, is an important step in treating these symptoms.

Atypical Depression can impact your cognitive abilities: You may struggle with concentrating, a slowing of processing, deficits with short-term memory, or have thoughts of suicide. In rare cases, you may have auditory or visual hallucinations. For many AE patients, this is a very common symptom of disease progression.

What can I do if I think I’m suffering from AE depression?

If you feel that you may be suffering from AE depression, just know that you are not alone. AE is truly devastating, and the life you’ve always known probably isn’t the same anymore. You may have financial and relational stress, and life might be feeling really hopeless right now. You may be still dealing with active medical concerns, and feeling scared, alone, and helpless. Feeling depressive symptoms is not your fault, or indicative of any personal failings. It’s a perfectly normal emotional response given the amount of trauma that you have experienced as a result of having AE. The first thing to do, is to recognize the signs, then get help. Many people have an emergency plan in place with their neurologist or an emergency prescription of prednisone to resolve symptoms so they can address this quickly. The difference in atypical depressive symptoms and AE active disease/flaring, is that the change is quick and dramatic.

Including a therapist, as a member of your support team, can be very beneficial. This therapist needs to understand that any neuropsychiatric symptoms you are experiencing are a direct result of autoimmune encephalitis and I recommend that they have permission to discuss your case with your neurologist. Ask your neurologist for a referral. Typically, once you have an appointment, you will meet with the provider to discuss how you are coping with your symptoms of AE, and decide on a course of action. Due to the impacts on the brain, patients with AE can suffer from traumatic brain injuries. When appropriate, rehabilitation from this brain injury can be incorporated. Treatments such as cognitive behavioral therapy and medication may be given as an additional support until the immunosuppressant treatments take full effect, but should not be used as the only treatment intervention for patients with AE. Life-style changes that adapt to your disabilities from AE, as well as avoiding stress and overstimulation can be helpful as well.

I’m a caregiver and I think I’m depressed, what can I do?

For caregivers, depression can take the form of something called “Caregiver Burnout.” Caregiver burnout is a state of physical, emotional, and mental exhaustion that may be accompanied by a change in positive and caring attitude to negative and unconcerned. Burnout can occur when caregivers don’t get the help they need, or they try to do more than they are able to, either physically or financially. The symptoms are similar to typical depression:

  • Withdrawal from friends and family

  • Loss of interest in activities previously enjoyed

  • Feeling blue, irritable, hopeless, and helpless

  • Changes in appetite, weight, or both

  • Changes in sleep patterns

  • Getting sick more often

  • Feelings of wanting to hurt yourself or the person for whom you are caring

  • Emotional and physical exhaustion

  • Excessive use of alcohol and/or sleep medications

Like AE patients, recognizing the symptoms and getting help is key in getting better. Don’t be afraid to admit that you may need help. Caring for someone who is ill is a very difficult job, and it’s ok to feel hopeless or helpless. When those feelings become overwhelming or impact your ability to function during the day, help is needed to restore your sense of balance and wellness.

Self-help for Atypical Depression:

Along with seeking treatment to manage depressive symptoms there are several things you can do that may help you cope with depression. Developing self-help strategies to manage your depression in day to day life can make a huge difference to how well you are able to live with your symptoms. These strategies can also be helpful for patients suffering from AE depression, but should only be used in conjunction with IV or oral steroids, as AE depression is indicative to active disease.

  • Journal your thoughts by writing them down. It’s a good way to make sense of your feelings, and it can also help you figure out which thoughts and situations make your symptoms worse.

  • Learn relaxation techniques. Relaxation techniques are great for reducing stress. Take a yoga class. Go for a walk. Listen to music, or read your favorite book.

  • Eat well and keep active. Moving your body helps to stimulate hormones (like endorphins) that help you feel better about yourself. Try to aim for 20 minutes of continuous movement throughout the day. Mak good food choices, and avoid “junk” foods, and aim for whole, and complete foods.

  • Take some time out to do things you enjoy.  Living with AE can make it really hard to get motivated to socialize and do things you enjoy. Try and make yourself do one thing you usually enjoy each day.

  • Get back into nature. There’s research that shows that when you have contact with pets, plants, gardens, parks etc., it reduces stress and boosts your mood. Go for a walk outside.

  • Talk to someone you trust. Talking to a family member or friend is a great opportunity for you to express how you’re feeling. They can also provide you an outsider’s opinion on what’s going on.

  • Join a support group. It can be really helpful to talk to people who have gone through similar experiences. Talk to your doctors to find local support groups for AE or similar diseases.

  • Set small goals. Don’t expect a ridiculous amount of yourself; it could make you feel down if you can’t meet your expectations. Set yourself small goals and take things one step at a time.

  • Develop a healthy sleep routine. Sleep has a huge effect on our physical and emotional health. Try to aim for 7-9 hours of uninterrupted sleep each night. Talk to your physician if you find this difficult to do.

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Our website is not a substitute for independent professional medical advice. Nothing contained on our website is intended to be used as medical advice. No content is intended to be used to diagnose, treat, cure or prevent any disease, nor should it be used for therapeutic purposes or as a substitute for your own health professional's advice. Although THE INTERNATIONAL AUTOIMMUNE ENCEPHALITIS SOCIETY  provides a great deal of information about AUTOIMMUNE ENCEPHALITIS, all content is provided for informational purposes only. The International Autoimmune Encephalitis Society  cannot provide medical advice.


International Autoimmune Encephalitis Society is a charitable non-profit 501(c)(3) organization founded in 2016 by Tabitha Andrews Orth, Gene Desotell and Anji Hogan-Fesler. Tax ID# 81-3752344. Donations raised directly supports research, patients, families and caregivers impacted by autoimmune encephalitis and to educating healthcare communities around the world. Financial statement will be made available upon request.

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