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

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

Postby Anti-NMDA Mom » Sep 21st, 2017, 8:44 am

May 28, 2015
In between trips to the hospital, we're packing our sold home, and working at having the subjects removed from our purchase. The lawyer (with trepidation) asks about my daughter, I look up from the mortgage documents I'm signing, stay very, very dry and clinical, and say "She went on life support yesterday." I heard her swallow, hard.

I flash back to the lead nurse sitting with me in the ICU family room when I asked her about the ventilator. "Is my daughter on life support." She quietly places one hand on my forearm, and the other on my shoulder: "Yes, she is. We're doing everything we can." What was said by the umpteen Drs that followed her are now a blur.

I've bought the book Brain on Fire, and I'm reading it to her when I'm not playing her some music. The nurse pokes her head in so, I stop and express that I feel foolish because I’m reading to a person whose pretty much left the living world and is 'somewhere else' right now. Nurse: "Don't stop, it's good for her. We always assume they can hear." This reminds me that a few days prior, one of the ICU nurses was actually one of our neighbours, except Kim had degraded so badly, that she was completely unrecognizable. Once the nurse recognized me and figured it out, she wasted no time in saying "She's still in there, I feel it."

A diagnosis!
As suspected, my daughter has Anti-NMDA Receptor Autoimmune Encephalitis. That is quite a mouthful; her recovery will be similarly long. The neruologist sits me down to tell me that there's a strong possibility we could lose her to complications because she's gone so far. I learn she' can't be an organ donor despite her wishes due to the autoimmune condition. She CAN HEAR! Her arm lifts up and down immediately, and slaps the bed rail. I swear it's her way of telling me she's not going anywhere.

The disease might have other ideas though, it's gone to the point where receptors that have been wiped out are for vital organs, lungs, heart, intestines. The nasal feeding tube is replaced with a direct line feeding tube inserted through her abdomen. IV amino acids are not sufficient, or meant to sustain a person long-term, so they're going to keep trying to tube-feed her. She has wasted away and is looking skeletal, less than 70lbs now.

Some days ago, I had told the boy she was seeing that she was placed on life support, and that we did not know if she could pull through. He said he had a busy week and he'd try to come see her. I had to visit the RCMP detachment and happened to see him skateboarding with his friends down by the Grand Hotel. "Busy", I see how it is. This adds so much hurt, because I know how much she loved this boy, this child. He's obviously too immature to get the seriousness of this. Perhaps he's panicking about who will help him pay rent, buy him food, drive him around --- it certainly won't be my daughter.

God I'm hurt by this, Kim would be devastated. The last message I sent him was about her diagnosis. No response.

It is time for the beginning of many thank-yous: During this phase of our journy, thanks go to the nursing staff of ICU units A, B & C. Drs Chobay, Rolf, Foster, Craig, Godin, Hignell; realtor, Ryan P; lawyer, Sara B; mortgage broker Steve D.

Here's a song that sort of embodies the disconnectedness of the time. (I don't know if it applies more to her, or to me.)
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Re: It's Not Mental but Looks Like It - Autoimmune Encephali

Postby Anti-NMDA Mom » Sep 27th, 2017, 3:02 pm

June 4/15
She begins to have small increases in movements, is awake some and trying to sit up.
It is strange to see this, but she sometimes goes rigid and brings her legs up to her chest, and I can't tell if it is because she's in pain, or if it's one of these involuntary movements because of the NMDA.
They tell us she’s going to have some time in a special chair; anything is better than this.

She backslides; no chair time; there is that damn tachycardia word again. She is still in the critical section of the ICU.

June 5/15
She still frequently has what are perceived as seizures, more EEGs are ordered. She is given more sedation to try and calm those seizures. While this condition leaves brain matter intact, seizures, do not, and she's possibly going to be permanently impaired. They call it an ABI, Acquired Brain Injury.

I wait for what feels like an eternity, but am glad to learn that the latest round of EEGs show she’s not having seizures as bad as the hundreds before, but that she’s having tremors, involuntary limb flailings, and rigidity that are part of Anti-NMDAR Encephalitis.
My newest concern is that her tummy is so very distended and they need to figure out why, more scans. I am not told what, if they found anything.

June 6/15
Sedation is reduced to allow for detection of progress, but It is obvious to me that she suffers greatly. WHile I'm there, she sticks out her tongue and then clamps down on it—her eyes go wide and I can tell she's not doing this on purpose. Oh my God! She’s going to bite her tongue off. I get the nurse in the room and she tells me that it's not permitted because of the danger of being badly bitten. I ignore the nurse---I'll take the risk---and stick my fingers in her mouth anyway so that her tongue can be shoved back into the safety of her mouth. They strap yet another device to her head to keep her from doing that again. I am told that some patients break the blocks and/or their teeth during a seizure, so there are risks regardless. What else is new?

She can feel pain, it is obvious;
she can hear me, and I see the fury in her eyes;
she can’t speak;
she can’t keep herself safe;
I can’t keep her safe---this is a nightmare.

June 7/15
Routine blood tests are coming back showing her body is not handling things well. The liver has to be safeguarded to withstand treatment, so the quick-acting sedation is switched to a longer-acting one, and I’m told she may be "out for days at a time" (they didn't come right out and say 'coma', but yah, I get it). That’s okay. If I were trapped in my own head, I too would want to be completely sedated. They have to suction the acid out of her stomach, the food (that yellowy slurry) won't stay in it yet, and her body wont' stop producing acid; the last thing she needs is a bleeding ulcer.

Later in the day, they fine-tune sedation and she appears to be more comfortable, but she is still awake. It becomes obvious that sedation doesn't look the same with this disease, I do more research and learn that other sufferers don't respond at all, weird. There's a Facebook group for people dealing with this, and I’m in touch with 20 active members who are going through/have been through this.

There is only one foundation/charity dedicated to this disease: The Anti-NMDA Receptor Encephalitis Foundation, Inc It was founded by a woman whose daughter has been fighting this since 2008, she was the first confirmed diagnosis in Canada.
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Re: It's Not Mental but Looks Like It - Autoimmune Encephali

Postby Anti-NMDA Mom » Jan 1st, 2018, 2:01 pm

Happy New Year!

Today on HLN (2:00 pm Shaw cable, I think), the show Something is Killing Me is featuring Anti-NMDA. The episode is called 'Into Madness'.
http://tvlistings.zap2it.com/tv/somethi ... page-title

There was another case in Kamloops in 2016.

djbout likes this post.
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