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Psychosis or Something More? A Family’s Search for Answers

Psychosis or Something More? A Family’s Search for Answers

As a 21-year-old stay at home mom to a precious little boy, Benjamin, I never thought that something so life-altering would happen to me. My husband and I had spent 9 months trying to conceive our second child. Finally, in June of 2021, we were able to get pregnant. Around the same time, many random things started happening to my body.

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The Darkness of a Brain on Fire

Numbers, numbers, numbers – we all have them. It’s how we organize and make sense of what’s happened to us. It is how we put our experiences into boxes so that they don’t spill over into every aspect of our lives.

For me it was 1,000 mg of steroids, 7 Plasmapheresis infusions, 6 EEG’s, 5 MRIs, 4 CT scans, 1 PET scan, 1 botched lumbar puncture…

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What happens when your autoimmune encephalitis treatments aren’t working?

If you’re lucky, you have a doctor that realizes just how pernicious AE—brain inflammation—can be. More importantly, they realize they have multiple tools at their disposal to treat it and take responsibility for actually wielding them.

This can mean going beyond steroids, beyond IVIG, and sometimes even beyond rituximab (Rituxan)…

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Through the Eyes of Mom

The wind caressed your face in the freedom, flying was your passion, not just living every day for 12 years, but imbuing passion in your brush strokes, mixing colors was your entertainment, how can you not reminisce about fulfilling the limits of your imagination, you created more than a surprising image.

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Falling through the looking glass…

In May of 2020, I was a healthy, vibrant, smart, loving, pre-med student at Penn State, nicknamed the ‘mayor’ of my large friend network … until I fell acutely ill. Within 7 days of hospital admission, for what seemed like some type of stress induced altered mental status, I became catatonic. My mom watched in horror as her daughter’s light rapidly dimmed; losing a piece of what defined me each day. By day 7, I no longer spoke or appeared to recognize anyone, my heart rate became unstable, I could no longer walk or eat, and my kidneys began to fail.

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Letters to Our Before AE Selves, Part II

Welcome to Part II of the IAES Blog series for AE Awareness month 2022; Letters to Our Before AE Selves. We are privileged to present the following heartfelt letters written by AE patients (AE Warriors) and caregivers to themselves, or the loved one they care for.

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Letters to Our Before AE Selves

In celebration of AE Awareness Month, we are pleased to bring you a two-part IAES Blog series of letters written by AE patients (AE Warriors) and caregivers.

The following compilation of letters expresses the thoughts and feeling we would write to our ‘Before Autoimmune Encephalitis’ selves.

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Blood, Sweat, and Clusterin

If we can figure out how things like youth and exercise improve memory, perhaps we can use those same pathways to develop treatments for dementia and related disorders.

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Genetic Predisposition for Autoimmune Encephalitis

It turns out that some types of AE, like limbic encephalitis, are more closely tied to genetic risk factors than others7. The main genetic factor that has been associated with limbic encephalitis is called human leukocyte antigen (HLA).

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Guilt and Forgiveness

By definition, guilt is like shame. Or pride or embarrassment. It has been described as a self-conscious emotion, one that involves reflection on oneself and sometimes on others.

This is a subject that is difficult for AE Warriors, caregivers and medical personnel on so many levels. As 2020 turns into 2021, I believe this is worth taking a look at, talking about, facing head-on — and putting to rest — in a kind and loving way. Turning over a new leaf, so to speak, as we head into a joyous, healthy and prosperous 2021.

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Introducing: IAES Video Blogs

The International Autoimmune Encephalitis Society, (IAES), is excited to announce the roll out of a new information resource, video blogs (VLOGS). This ongoing video series will be an addition to our popular IAES Blog articles.

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Why getting better at baseball might require just a little sleep

Not every experience you have or fact that you encounter turns into a long-lasting memory. Many of these moments slip away, while others become stable, long-lasting memories in your brain. This process of stabilization, called memory consolidation, is influenced by many aspects that impact learning. One such factor is sleep, which is critical for the consolidation of a memory.

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Rehabilitation Strategies

My name is Mari Davis, and I am the Support Services Coordinator with the International Autoimmune Encephalitis Society. I was diagnosed with limbic encephalitis almost 5 years ago after having seizures at work. After being diagnosed with AE, I received plasmapheresis, IVIG and steroids. Due to ongoing seizure issues, I remain on seizure medications, and I continue to have memory issues.

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The Episode

On this day of Thanksgiving in the US and in honor of Caregiver Awareness month, the staff at IAES wish all of you a blessed and thankful day!
We are honored to share with you a poem written by a very special caregiver of one of our members.

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5 Ways to Answer “How Can I Help”

Caregivers still need help. Caregivers still want help. But caregivers get a little triggered by kind offers from well-meaning people—and here’s the main reason why.

Because it feels like more work.

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Caregiver’s guide to self care & avoiding caregiver burnout

A caregiver is anyone who assumes a significant level of responsibility for another person. This could be a family member, friend, or home healthcare worker. Caregivers demonstrate selflessness, commitment, and duty every day. But they also take on emotional and physical burdens that can become overwhelming.

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Ataxia and Autoimmune Encephalitis

Imagine you are at a playground with your friends playing hopscotch. It is your turn. You jump with both feet, hop on one foot, hop on the other, all just to get to the end. This type of motor control and balance is controlled by a particular brain structure called the cerebellum.

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Halloween Ideas

Every parent or caring adult knows all kids have gone through enough during the past few years. They deserve to have a fun and memorable Halloween celebration, keeping in mind the Covid-19 rules and mandates still in place in many states and countries.
Trick-or-treating was certainly different last year and may be this year as well.

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A Letter to Mom

Dear Mom,

It has been a while since I have written you a letter. I apologize. There is a lot to tell you and talk about. I suppose the emotion of it all made it tough for me. Still, no excuse, you are my Mom and I love and miss you dearly and always will.

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PANS and PANDAS: What are they and how do they relate to autoimmune encephalitis?

Pediatric Acute-onset Neuropsychiatric Syndrome (PANS) is an autoimmune condition that occurs in children as young as three years old1. It is difficult to know how common PANS is due to the difficulty in diagnosing this relatively newly-recognized disease. PANS results in a very rapid (seemingly overnight) development of obsessive-compulsive behaviors in previously healthy children.

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Autoimmune Encephalitis and Eating Disorders

Eating disorders impact the lives of millions of people around the world, with negative effects on the physical and mental health of people with these disorders as well as their families and friends. In 2018, the estimated prevalence of eating disorders in the United States was 4.6%. Caretakers of relatives with eating disorders also report impaired mental health with feelings of anxiety, powerlessness, sadness, and desperation.

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Daring Daisy Part 4

Being in and out of various hospitals has become second nature to me. The hospitals and staff are like my second home and family in many ways. Between getting weekly infusions and having issues with high and low blood glucose levels due to AE has me in various hospitals all the time. I had surgery last year to put an arteriovenous (AV) fistula in my arm. The surgery and recovery process were difficult.

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A Detailed Look Inside The Human Brain

We all appreciate the complexity of the human brain. While our hearts, lungs, and livers are very similar to those of other mammals, our brains are what distinguish us from our primate ancestors. Humans learn, communicate, adapt, and connect with each other like no other species on Earth. But until recently, the true complexity of the human brain was still a mystery. Scientists often use animal models to study the brain because of how difficult it is to gain access to human brains both technically and ethically.

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We Shall Overcome

It was July 4, 2013

I sat in a plastic chair with my arms wrapped around my knees curled up with my toes pointed to the floor. Non-responsive. Catatonic. I was not aware of the date, as I sat unmoving holding that position from 6am on July 4th until 1 a.m. on July 5th.

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Who’s Who in the World of Physicians?

The staff at IAES is proud to present a different type of blog. During the course our AE journeys each of us has had the pleasure of being treated by and interacting with what seems like an overwhelming diversity of doctors, specialists, nurses, and therapists. We have all had challenges keeping them straight. At times we have all had problems with knowing who to ask what, how to ask and where to go for assistance. AE is overwhelming enough and keeping all the medical personnel straight can sometimes make it even more challenging.

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Creativity in the Brain

Creativity can often feel spontaneous and out of our control. It can hit us all at once, seemingly coming out of nowhere. Then there’s writer’s block. The struggling, uninspired artist. The elusive solution. Scientists have long been trying to understand creativity by uncovering its biological basis. What is happening in the brain when we have that lightbulb moment? To tackle that question, we first have to ask: what needs to happen in the brain to switch on the light?

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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.

CONTACT US


352-527-2470

IAES@AUTOIMMUNE-ENCEPHALITIS.ORG

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