Brain on Fire: Book on Young Adult with Autoimmune Disease

[SurfMom]

Possibly an interesting read:

 

http://shine.yahoo.com/book-club/-brain-on-fire---a-writer-possessed.html

[Agnes26]

The author is going to be on NPR's Fresh Air tomorrow. Apparently, PEX and steriods fixed her autoimmune/brain issues.

[mdmom]

Did anyone else listen to her speak on NPR's "Fresh Air," today?

 

The disorder sounds so much like PANDAS/PANS and she was treated over an 8 month period with steroids and IVIG. Hmmm...sounds familiar.

 

Author was also on the Katie show today.

 

Also, she did admit that she could relapse at any time.

Edited November 14, 2012 by mdmom

[Teri]

I did get to listen to NPR's program - really intriguing! What does this mean for our kids? Definitely related !

[MomWithOCDSon]

I just purchased the book and downloaded it onto my e-reader. I plan to start it tonight, and though I missed the "Fresh Air," I'm going to download the podcast and listen to it, as well.

 

Based on what you guys have heard already, it seems like we might want to reach out to this author and/or her doctor . . . I'm intrigued, inspired and encouraged.

[PowPow]

I did get to listen to NPR's program - really intriguing! What does this mean for our kids? Definitely related !

In so far as, there might be a causal component to what we are considering PANDAS (really an autoimmune encephalitis perhaps~ at least in some cases) that has not been recognized yet. (just as the anti-NMDA factor was not recognized a decade or so ago)and down the road, they will say " AHA! that is what was making all those PANDAS kids sick !"

My child was tested for this and the testing facility suggested the above to me.

[mama2alex]

I started listening to the podcast, but then decided I'd just read the book. I started reading it last night. The similarities are very intriguing to me, though I'm not expecting any real answers from this book.

[norcalmom]

FYI - Dr Cunningham said that she is hoping to add the anti-NMDA antibody test to her panel. She mentioned this on the blogtalk radio podcast last week, at 34 minutes into the the podcast. Doesn't say if it will be availible when the other tests are in early 2013 or not.

[melanie]

Dr najjar is dannys dr. If anyone needs a referral in box me. He is unbelievable. Love him!!!

[MomWithOCDSon]

Anybody see her interview with Katie Couric? I DVDR-ed it and took a look over the weekend. I wish they'd spent a little more time on the sublter features of it all, but I do have to say that I think it is positive insomuch as it is yet another real-world account of what auto-immune disease can do to the brain. And that it CAN be recovered from!

 

Dr. Najjar was also interviewed briefly. He basically said that the condition is "somewhat rare," but that to a large extent, that may be because it has been misdiagnosed, potentially for centuries. They sort of suggested that historical accounts of stuff like "demonic possessions" may, in fact, be instances of this kind of encephaletic onslaught.

 

Still reading the book (on Chapter 12) but am struck by a few things in particular, thus far:

1. Like some of our kids' PANDAS/PANS cases, her symptoms seem to build for some period of time, beginning with sublter atypical "personality" type discrepancies, like brief moments of paranoia, intense jealousy, fear, etc., only to return to her more "normal" self shortly thereafter.
   
2. Sort of early on, she had sort of a migraine-type reaction to lights and movement, with the billboards in Times Square coming off as especially intense and assaulting in terms of vividness of color and brightness.
   
3. Thus far, she's had two, very distinct seizure episodes . . . drop to the floor, loss of muscular control, biting her tongue, etc.
   

 

All in all, very interesting!

[mdmom]

I watched my recording of this on Katie last night. It is great that the author is getting the word out on autoimmune neuropsychiatric illness. It can only help our cause.

 

I thought they did a good job of keeping the story simple especially when they mentioned treatment. They only talked about the treatment with steroids. According to her interview on NPR, she also had IVIG. Had they mentioned this on Katie, this would confused people. Everyone knows what steroids are; IVIG would have sounded strange, since most people do not know what it is.

[peglem]

I watched my recording of this on Katie last night. It is great that the author is getting the word out on autoimmune neuropsychiatric illness. It can only help our cause.

 

I thought they did a good job of keeping the story simple especially when they mentioned treatment. They only talked about the treatment with steroids. According to her interview on NPR, she also had IVIG. Had they mentioned this on Katie, this would confused people. Everyone knows what steroids are; IVIG would have sounded strange, since most people do not know what it is.

Yes, but, really it would have taken about 5 seconds of air time to explain that IVIG is giving antibodies from donors to the patient.

[melanie]

HUH?? Nancy what is that about...What !!!This is dannys Dr please inbox me

[mama2alex]

I finished the book a couple of days ago and really enjoyed it! I agree that this is good for general awareness - it brings into the mainstream the idea that mental illness can have a neurological/immunological cause, which the vast majority of people still don't know. I also got one little nugget out of the book. She talks about believing her father was an imposter during her illness - this happened to our ds in the first year of PANDAS. It was fleeting and only happened a few times, but it always bothered me and I asked several doctors, including a psychiatrist about it. I asked if it was psychosis, and they all said no, but couldn't tell me anything else. It turns out this phenomenon is call Capgras Syndrome and is common in people with schizophrenia, brain injury and dementia, and occasionally happens to people with diabetes and hypothyroidism.

[MomWithOCDSon]

Well, I finished this book last night and came across a couple of other things that really resonated with me and our experiences:

 

• Even after months of steroids and several IVIG treatments, and the doctors decided to taper off all of her anti-anxiety and anti-psychotic medications, the author says, "I still had a long way to go before returning to the person I once was.. It's clear to me now that I was still in the midst of a very imprecise stage in recovery, which Dr. Dalmau and others are studying closely. 'The patients are back to normal, essentially, by family assessments, by friends' assessments, and by physicians' assessments, but they are not back to normal by the same patient's assessment," Dr. Dalmau explained. 'And this lingers for quite a long time. Recovery takes as much as two to three years, or even longer.'"
  
• The author also notes a 1981 paper by Robert Delong describing "acquired reversible autistic syndrome" in which an ecephalatic disease presented like autism, but 2 of the 3 children studied recovered fully.
  
• Another doctor she interviewed, Dr. Balice-Gordon, believes that a percentage of those diagnosed with autism and schizophrenia might in fact have autoimmune disease.
  
• She mentions several times that, during her recovery, her shins ached when she walked any distance.
  
• Especially earlier in her recovery, she noted how difficult and energy-zapping "being social" was for her; "My inner life was so jumbled and remote that I couldn't possibly summon up breezy conversation."
  
• Many people here have talked about the "turning back of pages" in the healing process, especially following IVIG. Susannah describes the same process. "In my case, the return to psychotic behavior was actually a sign of improvement, because the stages of recovery often occur in reverse order: I had passed through psychosis before I got to catatonia, and now I had to pass through it again on my road back to normality."
  

 

To me, all these "commonalities" with our own PANDAS/PANS experiences just further support its position as a full-fledged auto-immune disease and should help drive home the point to would-be naysayers that ours is not some bizarre, fictious, "outlier" of a disease, but one who's "cousins" -- like NMDA receptor autoimmune encephalitis (Susannah's diagnosis) -- share many traits, treatment options, and even outcomes!

 

I wonder . . . does anyone know if "NMDA receptor autoimmune encephalitis" appears in that magic medical reference book? What is it called . . . the DMSR, or something like that? (Sorry to be so lame . . . I can't keep all the initial-laden terms straight!)