Brain on fire

[cobbiemommy]

I hope I am not breaking any rules, here, but this book struck a nerve. Looks a lot like PANDAs, the doctors called it anti-NMDA-receptor encephalitis.

 

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Brain on Fire: My Month of Madness [Hardcover]

Susannah Cahalan

Susannah Cahalan (Author)

› Visit Amazon's Susannah Cahalan Page

 

 

o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o

 

 

 

 

This title will be released on November 13, 2012.

 

 

 

 

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Book Description

Release Date: November 13, 2012

One day in 2009, twenty-four-year-old Susannah Cahalan woke up alone in a strange hospital room, strapped to her bed, under guard, and unable to move or speak. A wristband marked her as a “flight risk,” and her medical records—chronicling a monthlong hospital stay of which she had no memory at all—showed hallucinations, violence, and dangerous instability. Only weeks earlier, Susannah had been on the threshold of a new, adult life: a healthy, ambitious college grad a few months into her first serious relationship and a promising career as a cub reporter at a major New York newspaper. Who was the stranger who had taken over her body? What was happening to her mind?

In this swift and breathtaking narrative, Susannah tells the astonishing true story of her inexplicable descent into madness and the brilliant, lifesaving diagnosis that nearly didn’t happen. A team of doctors would spend a month—and more than a million dollars—trying desperately to pin down a medical explanation for what had gone wrong. Meanwhile, as the days passed and her family, boyfriend, and friends helplessly stood watch by her bed, she began to move inexorably through psychosis into catatonia and, ultimately, toward death. Yet even as this period nearly tore her family apart, it offered an extraordinary testament to their faith in Susannah and their refusal to let her go.

 

Then, at the last minute, celebrated neurologist Souhel Najjar joined her team and, with the help of a lucky, ingenious test, saved her life. He recognized the symptoms of a newly discovered autoimmune disorder in which the body attacks the brain, a disease now thought to be tied to both schizophrenia and autism, and perhaps the root of “demonic possessions” throughout history.

 

Far more than simply a riveting read and a crackling medical mystery, Brain on Fire is the powerful account of one woman’s struggle to recapture her identity and to rediscover herself among the fragments left behind. Using all her considerable journalistic skills, and building from hospital records and surveillance video, interviews with family and friends, and excerpts from the deeply moving journal her father kept during her illness, Susannah pieces together the story of her “lost month” to write an unforgettable memoir about memory and identity, faith and love. It is an important, profoundly compelling tale of survival and perseverance that is destined to become a classic.

Edited October 11, 2012 by cobbiemommy

[PowPow]

Thanks for sharing this, cobbiemommy!

This story is really interesting & there are several more like hers. If you look up NMDA on youtube, there is a video of one young woman in her hospital bed, there is video from an AAN Film Festival " a new kind of encephalitis".

When my daughter was tested (and was negative) for anti-NMDA receptor enceph. one of the testing doctors said he thought there could be an entire subclass of encephalitis caused by other autoimmune factors not discovered yet. They saved her CSF in case more testing options show up later.

Perhaps some of the PANS cases here without obvious causes, but with responsiveness to normal autoimmune therapies, are caused by these unknown factors. In fact, they did not consider my child PANDAS (no strep) but autoimmune encephalitis. Makes no real difference at this point, but who knows? Maybe in a generation more researchers will figure out the real cause for some of our kids!

 

The author of the book mentioned is featured in Readers Digest this month.

Interestingly enough (or maybe not "brain on fire" is how I have described my daughter's condition at her worst. It was the only close description I could find. In fact, I used it yesterday at the psychiatrist !

[MomWithOCDSon]

Thank you for this! I am really looking forward to reading this and finding out what treatment regimen ultimately brought her out of this!

[dcmom]

Hi all-

 

This is a story of a doc willing to think out of the box. I happened upon this story over a year ago- it was in the newspaper- I saw it online. I actually tried to see Dr Najjar- but he (typically) does not treat peds. I do know a family of a young adult who see him, and they have been very happy. BTW, not all of the associates in his practice are pandas savvy ( I am restraining myself here). I do know the woman was treated with pex (and possibly IVIG) along with longer term steroids. I am looking forward to reading the book.

 

I have to say as of late, I am really becoming more frustrated (I guess with the BCH story, along with my own personal fears). This is NOT rocket science. We are at a place where we know (for the majority of cases) how to treat this pretty successfully- yet because of the sad state of our medical care system- kids suffer. My kids are doing well now- but they have suffered a lot, and I live in fear that pandas will strike again and hard. If I could prescribe what they needed- and could get it- I have every confidence they would not have to ever suffer again. Really just have to block it out, because it can drive me crazy

[airial95]

This is interesting to me. It has been suspected now that I had PANDAS as a kid, Dr. B said that based on our family history for my son, it's likely. (strep 6-8 times per year, very hard to clear, was hospitalized in 6th grade for strep, had lots of anxieties and quirky behaviors, and now have been clincally dx with OCD - leftover from my untreated PANDAS maybe??)

 

Anyway - in college, I had a similar, although not quite as severe episode. I lost almost a week to blackouts. My roommates and boyfriend reported all sorts of strange/odd behavior at the time, but nothing to give them to much alarm until the 3rd day, when it became clear that I was "missing time" - repeating myself, for example: arguing with a friend because we really needed to get to studying - minutes after he had just left a 3 hour study session at my apt...etc. My roommates couldn't wake me the next morning, and called my advisor (small college - we were like a family), he called my folks and advised them to let me sleep. I was taken by ambulance to the hospital later that afternoon after showing up in my calculus class in my nightgown with no shoes (this was late February in the Allegheny Mountains of PA) and then lost conciousness.

 

The first thing I remember at all is waking up at the hospital being physically restrained by the staff as they were trying to re-insert my IV - that I had yanked out. I had NO clue what was happening.

 

I was 18 years old at the time, away from home, and my folks had moved to FL. I was in the hospital for about a week, and eventually checked myself out AMA - after they ran loads of tests they couldn't find anything wrong with me (although the first 2-3 days I was there I was still blacking out and still have no memory of any of that). At that point I just wanted my mommy and wanted to go home and all the issues seemed to have resolve themselves.

 

Until I read this thread, I never thought about that being related to my possible PANDAS. Thinking back, I did have strep already that semester - about 2-3 weeks before this incident, and I was given an antibiotic at the hospital (I can't remember what for exactly - memory loss and all...) My family doctor chalked it up to stress - because I had always been "high-strung" and an over achiever (sound like any of our kids???)

 

Now I'm totally going to have to get this book and read it...

 

That's what I love about this place - always discovering new angles I hadn't thought of before!

[EmilyK]

Definitely. One of my sibs was thought to be bipolar but only ever had 2 mania episodes in an 18 month period subsequent to having had lyme and meningitis a few years before. He never had further episodes and my dad and are now convinced it must have been PANDAS. And then my dad and I were talking about how I constantly had strep throat until I got my tonsils out age 6. I distinctly remember at 4 1/2 going through a period of weeks where I was a hysterical nutcase over even ONE wrinkle in my tights or socks - falling down crazy screaming tantrums, those tights had to be perfectly smooth. And my dad and mom always used to marvel that their loud mouth little girl suddenly clammed up and got amazingly shy, quiet, and became a worry wort. I think my saving grace is that I was one sick kiddo with chronic infections and allergies and needing antibiotic for bronchitis, psnuemonia, sinus infections, ear infections at least 6 x a year. (I've managed to reduce it to 1-2x a year now with lots of diet care and supplements along with my allergy meds). Now go figure that I adopt my children and one has PANDAS - small world!