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It's Not Mental but Looks Like It - Autoimmune Encephalitis

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It's Not Mental but Looks Like It - Autoimmune Encephalitis

Postby Anti-NMDA Mom » Jun 8th, 2017, 10:57 am

Hi board members. My goal today is to help people understand a rarely-diagnosed condition that is gaining recognition in the medical community since its identification in 2007 by Dr. Josep Dalmau.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4495821/
Abstract
Anti-N-methyl-d-aspartate (NMDA) receptor encephalitis is a form of encephalitis occurring primarily in women and associated with antibodies against NR1 or NR2 subunits of the NMDA receptor. As a potentially treatable differential for symptoms and signs seen in neurology and psychiatric clinics, clinicians practising across the lifespan should be aware of this form of encephalitis. Common clinical features include auditory and visual hallucinations, delusions, behavioural change (frequently with agitation), impaired consciousness, motor disturbance (ranging from dyskinesia to catatonia), seizures, and autonomic dysfunction. We present a review of the literature on the disorder, including its clinical presentation, differential diagnosis, epidemiology, treatment and prognosis.

Anti-N-methyl-d-aspartate (NMDA) receptor encephalitis was first described in 2007 by Dalmau and colleagues, who identified 12 patients presenting with prominent neuropsychiatric symptoms. All were confirmed to have serum or cerebrospinal fluid (CSF) antibodies to the NMDA receptor.1 In a subsequent case series of 100 patients, 77 initially presented to psychiatric services. Although patients with anti-NMDA receptor encephalitis exhibit high rates of psychiatric disorder, psychiatrists may not be fully aware of the diverse presentation of this disorder. Given the high mortality rate (up to 25%), the likelihood of presentation across the age range and the potential for treatment, a high index of suspicion is warranted by clinicians.


There have been two confirmed cases treated here in Kelowna, several throughout BC, hundreds more in this country, and thousands worldwide. However, there could be thousands living with this disease without even knowing it. I have tried, repeatedly and unsuccessfully, to reach media outlets and contributing members from within the psychiatric community with the information that could save many from suffering, and save lives. However, this is 'not news'. I disagree, it is very much news that has been covered by major networks in the US, by CTV, and many others. In fact, a movie has been made starring Chloe Grace Moretz, Richard Armitage, and Carie-Anne Moss --Brain on Fire. To the best of my knowledge, the movie is to be released straight to Netflix later this year.

There is no doubt, with Kelowna being such a small town, there might be people on here who already know who we are and what we've been through, and now that our family is 2 years post-DX, it's time to use what we've learned to help out those who need it. Recently, I have come to learn that a family in Vernon has begun this journey. I would like to reach out to this family, because I have already been a parent to a young woman having to recover from this serious, sometimes deadly disease. If you know who these people are, please shoot me a PM.

Thanks for reading.
Last edited by Anti-NMDA Mom on Jun 13th, 2017, 7:09 am, edited 1 time in total.
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Re: Autoimmune Encephalitis

Postby Glacier » Jun 8th, 2017, 7:42 pm

Thanks for the info. I will watch the documentary when it comes out on Netflix. Sorry, I don't know the family hit with this in Vernon, but someone does, I'm sure.
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Re: Autoimmune Encephalitis

Postby Anti-NMDA Mom » Jun 12th, 2017, 1:07 pm

Thank you, Glacier.

There's another (third) case here in Kelowna now. I've been through this, and my heart aches for the family. My daughter had a follow-up today and she was asked to find out if I would be willing to help. We will be put in touch with one another by the care team as soon as it's reasonable.

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Re: It's Not Mental but Looks Like It - Autoimmune Encephali

Postby Anti-NMDA Mom » Aug 11th, 2017, 8:05 am

An update:

The 20 yr old young woman recently diagnosed was caught in time at VGH, received treatment right away, and did not have to spend so long in care. Ironically, it was at KGH this girl was almost re-diagnosed as having a psychiatric condition. It took advocacy and assertiveness to prevent her from a life-threatening situation. She had an atypical presentation that caused confusion at KGH especially considering certain psychiatrists' egos have a difficult time overcoming cognitive bias when a patient presents with psychosis to begin with. Added to the challenge is when patient advocates have more clinical knowledge on the condition.

More on cognitive bias here: https://www.youtube.com/watch?v=Lnm7AhL5BBM

Autoimmune Encephalitis is gaining recognition and is barely beginning to be diagnosed more reliably. It was due to knowing about my daughter's case that the psychiatrist at VGH was able to zero in on what the problem could be.

I chose now to make an update because of the current thread regarding the woman who attempted to break into a family's home in West Kelowna. The scenario is chillingly familiar to thousands of families worldwide whose lives have been permanently altered due to Autoimmune Encephalitis... which there are greater than 25 different kinds other than Anti-NMDA!
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Re: It's Not Mental but Looks Like It - Autoimmune Encephali

Postby gman313 » Aug 11th, 2017, 8:41 am

Thanks for sharing.

Is there a standard test for this? What is the likelihood of treatment success?
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Re: It's Not Mental but Looks Like It - Autoimmune Encephali

Postby Anti-NMDA Mom » Aug 11th, 2017, 9:26 am

Thanks for your interest, every person who knows is another person that can help.

My daughter had a heck of a time getting taken seriously; they thought she was a hypochondriac for the longest time. There was always something wrong with her... i mean ALWAYS, yet every test run on her came back negative for problems of any kind. However, there is a test for it, and it requires a lumbar puncture (spinal tap) for conclusive diagnosis, and special processing to find the titres. The antibodies can also show up in the blood, another specific test. There are two labs in Canada, a private lab in Calgary, and a children's hospital in Ontario. Having been through this, the private lab in Calgary is deficient in its practices, and samples need to be sent to Pennsylvania or Barcelona (yes, to Spain) for identification of any other antibodies (>25). Mayo clinics in the US also do testing, but I don't recall which ones because physicians here are encouraged to rely on Pennsylvania and Barcelona, where the team who identified this in 2007 are based, and they have the testing accuracy and research data that the other labs lack.

Treatment success varies on severity. My daughter has made remarkable progress in two years, but has reached a point where the remainder of her recovery may take years. As it stands now, she’s been left with an acquired brain injury, which has made it difficult for her to, for example, hold a job. She may not overcome this due to some things beyond our control that took place during her recovery process. The brain injury may also be from the extraordinary number of seizures she had in addition to a possible lack of oxygen when she crashed in ICU. She spent two weeks on a ventilator, and EEGs showed minimal brain function left only in her brain stem. Treatment had begun, and a pacemaker was not necessary, thank god. Treatment can include intravenous immunoglobulin (IVIG), plasmapheresis, steroids, various immunosuppressants, and chemotherapy drugs. My daughter had steroids and IVIG as first-line treatments, and when she did not respond to those, she had cyclophosphamide and rituximab. Yes, she lost her waist-length black, curly hair. The oral steroids were used for roughly five months in total.

There was a family in Australia, whose physicians advised disconnecting from life support based on the ‘minimal’ brain function of the girl. The family refused, and kept her alive in a coma for three years, and when they heard about this condition, investigation and diagnosis followed. It’s been many years, but this young woman is now doing well. I’m not aware of her ongoing deficits.

Another woman in Europe was being unsuccessfully medicated to treat schizophrenia for several years, and once her spinal fluid was tested, the Anti-NMDA diagnosis was made, treatment began, and she’s since made a full recovery to a point where she was better than ever before, which makes it fairly obvious, that like other autoimmune conditions, this had been active in her long before it masqueraded as schizophrenia.

Almost every family I’ve spoken with has also experienced having to deal with violence from the afflicted person in addition to their taking all their clothes off during an episode.

Let’s face it, it’s only just been identified in 2007, let alone tracing it back to how long it was active in each patient before it became acute.
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Re: It's Not Mental but Looks Like It - Autoimmune Encephali

Postby gman313 » Aug 11th, 2017, 9:41 am

Thanks for the info - and all the best for your family. scary stuff
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Re: It's Not Mental but Looks Like It - Autoimmune Encephali

Postby Anti-NMDA Mom » Aug 12th, 2017, 6:39 pm

Here is a link to the movie on YouTube: https://www.youtube.com/watch?v=dQRMVYVGII4

Susannah's case is less severe than my daughter's, but I'll say this, in the movie when her coworker, Margo, walks down the hospital corridor and you begin to see her crack.... that was me. That was me every day for 7 months of hospital visits.

The seizures, accurate.
The outbursts, accurate.
The terror.... you don't know until you live it.

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Re: It's Not Mental but Looks Like It - Autoimmune Encephali

Postby Anti-NMDA Mom » Sep 14th, 2017, 11:45 am

I feel the need to relate our experience because I have been through some very deep sorrows in relation to this condition, and want to help others recognize this horrible disease. It is especially important because another Kelowna family has suffered the deepest of sorrows because their daughter died in Edmonton due to ignorance and late diagnosis that led to fatal complications; she left behind a spouse and 2 babies.

Through the years, our girl... let's call her Kim... has had a less than normal health profile. Colic, vomiting without anything detected in bloodwork or scans. Her body temperature has never been normal, she has run a low-grade fever her entire childhood, not a single blood test (she was a pro, I tell ya) revealed anything.

At the age of 12, she stopped eating due to feeling the need to vomit, which was felt to be acid reflux and she was prescribed with Nexium (acid suppressor). The anxiety and aversion to eating were viewed as related and therefore treated as psychological in nature. She did not progress through puberty either, it was as though her body had stopped in its tracks. This was blamed on the 'eating disorder' and anxiety.

At 14, she developed a bald patch with no other symptoms (other than the above). She also had dermatitis of unknown origin. Through all this, we had her seen by paediatricians and skin specialists.

At 16, her great grandma passed away, so of course that was the reason given for her new anxiety, oppositional-defiant demeanor, and other personality anomalies. After a tumultuous time as a family, she was seen by several mental health professionals who could never really categorize her into a diagnosis... "...all an act for attention" was the term tossed about, informally.

In between these 'events' she was otherwise an engaging and pleasant girl. You'll notice they skipped a year and stayed with even ages, so we called the good ones the 'odd years', and often wondered what it was about alternating years that led to her having complete personality rifts. Maybe MH professionals felt it was all an act because by the time referrals came through and she saw anyone, we were in an 'odd year'.

Things were about to change... and what we knew to be odd, really didn't prepare us for what was next. In fall/winter 2014, she began having major hearing problems that she described as feeling as though her ears were in a box, and everything was muffled. Here we go to a new specialist (ear throat nose), who subsequently became incensed by her wasting everyone's time because he saw absolutely nothing wrong with her ears. Hypochondriac was the new term tossed about.

She'd been working at a job she enjoyed, and when I'd been to take her things (teenagers forget things), the adult personnel there were excited to tell me many good things about their observations. In March 2015, this too, however, began to deteriorate, and by springtime, she was paranoid she would be fired and began seeking second and third jobs.
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Re: It's Not Mental but Looks Like It - Autoimmune Encephali

Postby Anti-NMDA Mom » Sep 15th, 2017, 8:15 am

April 2015
The seams were coming loose. The forgetfulness was obvious, she was avoiding us at home completely, and the obsessiveness with the boyfriend (whom we never did see much of) had us rolling our eyes. She was unable to hold her first 'second job', and was dismissed for not being nice enough. So, she got a second; they too dismissed her, so she got #3. Clearly, she was personable and had no trouble at all getting hired. She was loving job #3, but then the dizziness set in, and she began trying to get help for that, nothing worked. She tried walk-in clinics; she drove up to Vernon (yes, dizzy spells and all) to VGH because she told us someone could check her for Lyme disease. Several trips to our GP were made over the span of a week or two.

May 2015
It wasn't until May 5, 2015 I got a 5am phone call from her in tears. I asked her why she was phoning me when she could easily just come upstairs. That was when I learned we'd slept through the ambulance coming and getting her at 2:30 am. She said she experienced complete loss of control of her body, and that her legs had been moving without her being able to control them. She was crying because she said they were mad at her and that there was nothing wrong. The oddest thing... her left eye was tear-less no matter how hard she cried.  I took her to the Dr that morning, and the inner ear issue was explored again, new referrals to ear-throat-nose guy to get mad at her again. The fill-in Dr asked her what she thought was wrong.
Her response: "Subdural hematoma"
Physician: chuckle.
Me: "Why do you think that?"
Her: "The pressure in my head is enormous, it feels like it's going to explode"

The first hallucination took place that night. She insisted that our house (listed for sale at the time) was full of Valerian flowers, which were toxic to her because she was a vampire. She tried to bite me, tried to bite our cats; this was supposed to save us by turning us into vampires, then she bolted from the house.
May 6, she seemed just weird (the new normal) but her arm was numb, and she had limited use of her left hand, I sent her to Physiotherapy, who thought there might be a pinched nerve. She also said her hand was blue (looked normal to me)
May 7, the physiotherapist sent her for X-rays on her neck before being willing to treat her, and her Dr finally saw her and prescribed ciprolex and Ativan. Okay, we might be getting somewhere.
Job #3 was a driving job, and when she called in sick because she was too dizzy to drive (and rightfully so!), she was terminated the day after. She was calling in sick to her primary job, I spoke with them and told them about all the dizziness and numbness, they seemed to understand, and I recommended they cover her upcoming shifts because I had no idea what would take place. It was a good recommendation, I know that for sure.

May 8 was an important day to remember, although I didn't know exactly why until several months later. She went for her X-ray and told me she was bringing them to the physiotherapist. Okay, I didn't know it worked that way. She was persistent at the physiotherapist feeling her hand was turning blue, he sent her to Emerg. What I didn't know until later-on, is that the physiotherapist detected severe neurological deficits and noticed her gate had changed. When he and I had this conversation, he looked at me and said, I’m so glad I called ahead for her to be admitted for neuro-workup. That's when I told him that no, they turned her away again as a flighty young girl with boy problems who was being a pain in the butt. The mental health clinician completely ignored the physiotherapist's and treated my girl as a head case.
That night as we sat at the dinner table, she didn't eat a thing. She told us she knows she should, but that she just hasn't had an appetite for days. She was beginning to make these chewing motions with her mouth, and would swing between complete euphoria at how the ativan was working and then wrap that off with a hallucination. She told us the inspectors in the basement were needing to speak with us to wrap things up. There were no inspectors in our basement, the sale of our home was firming up the following day; all inspections were done. Things were deteriorating fast, and she had more middle of the night hallucinations. A common theme was our being in an accident. She could describe for me the details of the accident we were having in our livingroom, complete with what intersection we were at.
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Re: It's Not Mental but Looks Like It - Autoimmune Encephali

Postby Anti-NMDA Mom » Sep 16th, 2017, 8:54 am

May 9, maybe the medications were finally working, she seemed a little better that morning, although her facial expressions were getting weirder, and weirder.  I couldn't help but still be alarmed by the hallucinations she'd been having.  There were none yet that day, but reading the text messages she'd been sending me from the physio office was disturbing.  She had been telling me about the skeleton's  movements with electrical current while it was talking to her.  She was feeling anxious and upset with her headaches and feeling unwell.  I learned that she hadn't been able to sleep, in recent weeks, which explains why I was awakened many times in the middle of the night, it was probably her milling about the house.   
 
I recommend maybe she go get some exercise and take a walk along the greenway because she's always loved it there and I suggest that it must might help her feel better.  She goes out and we text back and forth a bit, and she tells me she does feel good but that she has people stalking her now, so she's staying close to safety.  A little while later I receive more texts from her, and they're making less and less sense with each one.  Apparently, she'd lost her keys somewhere and had been retracing her steps unsuccessfully.  I told her to try the ECCO Centre to see if they had been turned in.  It turns out they had been.  The next thing I know, she's lost her car!  No not lost it... it's been towed, no, it's been stolen by the tow truck.   She's called police.   
 
A little while later, I get a phone call from a very kind officer, who is asking me if I can help her remember where she may have parked.  I share with him the location we've usually parked when we went there as a family.  He calls me back in a bit to let me know that her car has been found exactly where I'd suggested.  We talk a bit, and I share with him the hallucinations, the dizziness, and strange body movements, and that I'm concerned for the safety of others on the road.  I tell him that I'm going to confiscate her car keys.  He informs me that I can’t take away her car keys because she’s 18 and legally an adult.  I ask him if he can bring her in on suspicion of impairment, but he doesn't see any signs that allow him to make that call.  He does say, that she seems like an overly anxious young lady who is having a rough time, he is compassionate and shares some information with me for comfort.  I learn that what he can do, though, is follow her and if she makes any serious driving errors with an N, he can pull her off the road if needed. 
 
 
The officer's accounting of finding her car is completely different from Kim's.  She informs me that the officer made the tow company tow her car back and put it where they found it.  She's damned insistent that's how it happened.  She then picked up her boyfriend and stopped by the house, when she comes inside, I can see that she can't walk straight any more, and I tell her she should not be driving.  I follow her out to the car and the boyfriend looks at me with this look of help-me.  There are other factors at play with him. Through the day she's sending text messages that are making less and less sense, it is as though signals are being scrambled. I wished I'd known what was wrong, it was tearing me up to see her get this way.  
 
May 10th, Mother’s day 2015  
It's Sunday, she woke with the most bizarre behaviour and one hallucination after another.  A fatal car accident, and then her boyfriend stuck in blanket on livingroom floor.   I took her in to Emerg at 6:00am.  We arrive spend several hours sitting in the waiting room waiting for someone to see my daughter; this is just one of several of her trips to the ER since April.  While there she asks me:  “Mom, is your back itchy?  Mine is so itchy. “   
I reply:  “No, it isn’t.  Why would my back be itchy, sweetie?”  
She responds with:  “The doctors just surgically removed the clipboards from our backs, didn’t you feel it, mom?”   
 
Tears well up in my eyes.  This is yet another hallucination.  No one in our house has slept properly in nearly a week.  My 18 yr old daughter is on antidepressants since May 8th and had been having hallucinations since May 5th.  She is rejected again despite my trying to advocate for her.  I was told by the clinician that she’s overly anxious and that she’s had plenty of counselling and tools given to her that she has to “take responsibility for her anxiety” and work through it.   
 
I worry so much for her and the safety of others when she gets behind the wheel of her car.  I can’t take away her car keys because she’s 18 and legally an adult.  I learned the day before when she lost her car. 
 
Another hallucination later that afternoon and I phone the hospital mental health clinician desperate for instruction.  He tells me I shouldn’t console her through the episodes of hallucinations, body shaking, and leg pedaling, and that I must not give-in because I would be feeding the cycle.  He uses the analogy of a two year old having a tantrum.   
 
Later that evening she has what I now understand to be a seizure, I try to reprimand her and smarten her up, but it just doesn’t feel right.  This cannot be a performance, she’s foaming at the mouth, dammit!  I count the pills in her antidepressant bottle, she’s taken too many and I learn that she thinks it is morning every time she gets up after lying down for an hour.  I take the pills away with the intent of administering them to her at the appropriate time.   She was insistent that the boyfriend was not working the following day (untrue), and she was going to spend the night, but she had to wait, as he was hiding his relationship with her from his friends (that, that had been true for almost two years of their on-again off again 'thing'). Throughout the night, we hear her come and go repeatedly and I hear her car circle the neighbourhood.   
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Re: It's Not Mental but Looks Like It - Autoimmune Encephali

Postby JLives » Sep 16th, 2017, 10:21 am

Heartbreaking and fascinating. I can't image how challenging the journey has been. Thank you for sharing your experiences.
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Re: It's Not Mental but Looks Like It - Autoimmune Encephali

Postby Anti-NMDA Mom » Sep 16th, 2017, 8:36 pm

JLives wrote:Heartbreaking and fascinating. I can't image how challenging the journey has been. Thank you for sharing your experiences.


Thank you JLives. I can only hope that putting this information out there helps someone recognize this condition before it gets as bad as Kim's got. One psychiatrist in Vernon already saved a young woman's life by recognizing it and she was treated swiftly to arrest this condition's progression early. Every person who knows helps.

Bi-polar disorder, personality disorder, schizophrenia, autism, those things are all the kinds of things that people live with needlessly. The diagnosis and treatment isn't easy by any means, but the alternative is 'something else'.
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Re: It's Not Mental but Looks Like It - Autoimmune Encephali

Postby Anti-NMDA Mom » Sep 18th, 2017, 8:56 am

May 11
The next morning, she’s gone and I find her wallet and a notebook on her bed that is titled “Letters to distribute in the event of my death”. The first one begins with “If you are reading this, it means I’m dead.” She’s dramatic by nature and it would be easy to believe that by now our Dr would think she’s a hypochondriac. Knowing legally, my hands are tied, I muster the strength to go to work while expecting the worst to happen that day. My girl has always been dramatic and strong-willed, she’s easy for some to dismiss by now. Is it too late? Is this a suicide note? Is this how I’m going to lose my daughter, to suicide? Is she convinced she’s going to die from whatever is causing her hallucinations and seizures? NOTE: It was discovered later-on that my daughter wrote these letters because she was convinced that whatever was making her have these problems was going to kill her. She was right, this illness is fatal when left untreated.

Later that morning, a neighbour calls me at work to tell me the ambulance and RCMP are at my house and I panic. My daughter has fallen down the front steps---thank God she’s alive. The neighbour is a doctor teaching at the University here, he’s stabilized her during the seizure that made her fall. She’s uncooperative with paramedics, so I plead with the RCMP to help by showing them her note. I begin stressing how dire the situation has become; thankfully, they are kind and reassuring. The paramedics are wonderful people and tell me they’ll do everything they can to get her admitted; they take the note with them.

My daughter phones me an hour later, telling me she’s rejected again from the hospital and walking home because she can’t find her car. She asks me to come get her because it’s hot and doesn’t know where she is. After driving different routes between the hospital and our home (thank goodness we’re close), I find her and we head home. I tell her she must immediately take her medication, except she can’t find it, the hospital did not return it to her.

We return to the hospital and begin asking for her medication, we go past the ‘treatment’ doors and hear from down the hall: “Where have you been? We were looking all over for you!” Says the clinician (the same one who suggested I treat her like a two-year-old). He’s got a different tone this time.

She had walked out on them---she wasn’t rejected this time---yet. We sit. We wait. Finally, we are told the ER psych doctor will see her. This doctor starts our interaction insinuating that I’m an overbearing mother especially due to my controlling the medication (of which she was taking triple doses because she doesn’t know what day it is). I was stunned “THIS IS NOT NORMAL! THIS IS NOT HOW MY DAUGHTER SPEAKS OR ACTS EVEN DURING HER WORST TEMPER TANTRUMS.” I couldn’t contain myself and was shocked at the dismissiveness coming from health professionals being presented with a young woman who is clearly needing their help. The doctor leaves the room. A nurse comes in and tosses my daughter a gown and coldly states: “You’re being admitted, say goodbye to your mom.” We hug, I’m ushered out. I don’t know whether to cry tears of relief or sadness: she is safe, at last, but the girl I raised is replaced by this strange person with weird body movements and odd speech.

She calls me later that evening and leaves me a voicmail, she thinks she has been sent to the hospital in Vernon by mistake, and needs me to phone her and help. I call our hospital immediately, she is still there and there was no mistaken transfer. However, in the time it took for the nurse to answer my call, my daughter has used the phone to call 911 to tell RCMP she’s being held against her will. I apologize for my daughter’s actions and the nurse tells me not to worry because it happens all the time on that ward. I won’t be allowed to visit her until Wednesday the 13th.


May 13
The psychiatric ward is not a place one wants to be. My daughter is confused, vulnerable, can’t think straight, and wants me to hold her because she’s scared and doesn’t know what’s going on. Her pyjama top is wet. Is she sweating that much? I braid her hair, and she wants to lie down so I escort her to her room. Her room (four bleak cinder block walls, a urinal/sink combo, and a mattress on the floor) is in disarray, she’s thrown her water cup around and then her bedding. Now I know why her ward-issue pyjamas are soaked. As I lie with her, she begins to settle and says: “Mom, I’m so sorry to be putting you through this.” I tell her: “We’ll get you all better, you will see.”

May 14
I won’t be allowed to see her on Thursday; things are not going well.

May 15
I get a call informing me that a nurse has detected a fever and other indications that this is medical, not psychiatric. I see her that day. She barely knows who I am and is hallucinating the entire time. My heart is broken to see my daughter strapped at the ankes and wrists to a chair, but otherwise she hurts herself. Why do they have her hooked-up to a heart monitor? Why is her heart rate high when she's just strapped to a huge chair.

May 16
Initial test results are coming up negative, so I answer many questions from one of the doctors on her case and have to contact her friends to suss out whether she’s taken any illegal drugs. The answers are consistently ‘no’.

May 17
She is ushered down to the ICU in the early morning hours of May 17th, she’s slipped farther away.
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Re: It's Not Mental but Looks Like It - Autoimmune Encephali

Postby Anti-NMDA Mom » Sep 19th, 2017, 7:29 am

May 18
Testing begins for everything possible (even Lyme Disease!)
She is covered in large bruises and scrapes on her face that have been self-inflicted
She has continued hallucinations
Another test is done, a lumbar puncture this time. Risks? Forget the risks, the way things appear to be going, the alternative is obviously worse.
I hear clarity in her voice for the last time
She speaks some words and sounds that cannot be understood.

May 19th
I’m told she has swelling in her brain.
She’s talking less, sometimes she can be understood, it comes and goes.
She now has a catheter and an IV.

May 20
They begin treating with an antiviral pending test results, time must not be wasted
She can only whisper now, but still knows her name
She experiences catatonia, and begins drooling, a lot.
Drs do another lumbar puncture to test for very rare disease with a long name that I did not think I would ever remember.
The first stage of the treatment begins for this long-named disease – they’re that certain, but BC Medical won't authorize any further treatment until diagnosis is confirmed. If first line treatment doesn't work, she will deteriorate fast.

May 21-26
A feeding tube is inserted through her nose and she’s sedated most of the time.
There is some improvement, it’s short-lived though, as she slips once again, farther this time.
Her drooling becomes prolific (hyper salivation).
She’s placed on oxygen.
She’s not able to swallow and concern that she’s going to aspirate grows.
Her breathing is laboured.
I think it is around this time that pneumonia sets in, although I won’t be told she’s got pneumonia until June 10.
A PICC line is inserted and amino acid nutrition by IV begins.
My daughter cannot breathe, and nor can her body digest, her body rejects anything put into her stomach.
I do lots of research on this condition leading me to believe they are right. In fact, hope they are right because the prognosis, with its long recovery, looks better with this disease than any others. Doctors are in a race against whatever this is because she’s deteriorating.
EEGs taken from the 11th compared with now show a drastic slowdown in brain function.

May 27
I arrive for my daily visit, and as I walk towards to her room I sense commotion in a different room and intend to rush past, but it’s my daughter. She’s in the ‘Critical’ section of ICU this time and there are four people trying to hold her down, she’s gasping for air, flailing her arms and legs with all her might. I squeeze through strangers to get to her and take her hand to reassure her that they’ll look after her, so she has to just let them. The doctors intubate and sedate her. I know I will never forget the sounds of her gasps.

They let me back in and I finally give her a kiss on the forehead and talk to her in case she can hear me. Five minutes later I am ushered out again; an emergency tracheostomy is done; and she’s subsequently hooked up to a ventilator. I'm told there is minimal brain function in the brain stem. I understand this to mean she's on life support and nearly brain-dead. Tachycardia is the newest addition to my vocabulary; her heart rate is 170-180 bpm.

I’m so frightened.

I learn later that the term used for the interference with, or shutdown of vital organs is called Autonomic Dysfunction.
Anti-NMDA Mom
 
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