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  • pandas-cover-cropped.pngYour Child Has Changed; Should You Consider PANDAS?

    Have you seen our PANDAS eBook?  Our book is a helpful primer in a friendly question & answer format.  This eBook contains useful information to understand the symptoms of PANDAS, how it is diagnosed (including lab tests), the different types of treatments, approaches for prevention, and how to find the help and support that you need.  Your satisfaction is guaranteed. Learn more

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I just this weekend read a book that some of you may find very interesting. I don't even know how I found it on my Nook but I am so glad that I did! The book is Brain on Fire-My Month of Madness by Susannah Cahalan. It is a memoir written by a 24 yr. old NY Post reporter, a true story, about her medical mystery which turned out to be an adult (and extreme) version of an autoimmune storm similar to PANDAS/PANS resulting in brain inflammation. Started with mild ocd and fast-forwarded into full-blown psychosis and hospitalization. Fortunately, a wonderful doctor from University of Pennsylvania found the problem after NYU Medical Center contacted him for help. IVIG and plasmapherisis and steroids saved her life just before she was totally lost. I love to read and never have enough time to but I accidentally stumbled on this and read it in less than 2 days. I am so happy to know that there are doctors out there who are recognizing the brain inflammation/autoimmune aspects. As she points out in her book, how many people have been committed to psychiatric institutions or written off as 'mental' or 'autistic', when it is actually brain inflammation? So glad I stumbled onto this book!!!!

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QM: There is a post on the forum about this book. Interestingly my friend and I have the almost exact same story on symptomology of our children. We both thought our kids had pandas. The ER diagnosed her child schizophrenic and sent her home. Upon return to ER she demanded NMDA testing and her daughter was positive. She now recieves $1 million worth of treatment under insurance. (not that any of us want this diagnosis). I showed the treatment plan to Dr. L and she said "this is what all our kids need".

 

I found so many similarities to my son's situation that we actually did a spinal tap for testing. I know in the book Susannah's case sounds extreme but my son's seemed even worse or I wouldn't have put him through the spinal. He came up negative.

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Oh, PandasPhilly, I'm so sorry. There were many things that struck a chord with me in the book but we did not have the seizures or the sudden decline in faculties that the writer of the book had. As bad as it has been for us, I cannot imagine what you guys must have gone through. Is there now a straight-on NMDA test available or do you have to do the spinal tap for that? And when your tap was negative, where did you go from there, if you don't mind catching me up. If you don't want to post it all again, would it be on a history of your posts? How is your son now? Sorry for so many questions but we've been through and I am trying to learn EVERYTHING I can. My thoughts are with you.

QM

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The test is now commercially available and can be done by quest and sent to ARUP labs. There is a blood serum test for nmda but negative does not necessarily mean negative which is why we moved on to spinal. CSF is only tested at 2 labs so you have to wait a few weeks.

I'll catch you up on my son shortly if I can ever get this child to sleep :)

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I read the book months ago. Like PANS kids, if it weren't for her parents, she would not have been properly diagnosed.

 

Pandasphilly- when I was reading the book I kept wondering why our kids cannot get the treatments that Susannah Cahalan received. That treatment is now recognized as standard treatment. It's a "new " disorder. Here our kids still are struggling for treatment and insurance coverage and acceptance. Doesn't seem quite right.

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I read the book months ago. Like PANS kids, if it weren't for her parents, she would not have been properly diagnosed.

 

Pandasphilly- when I was reading the book I kept wondering why our kids cannot get the treatments that Susannah Cahalan received. That treatment is now recognized as standard treatment. It's a "new " disorder. Here our kids still are struggling for treatment and insurance coverage and acceptance. Doesn't seem quite right.

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Nicklemama, and to add to that frustration I spoke with a member of susanahs treating team at Nyu and they are definitely not on board with pandas. Despite the fact that the symptoms are very similar in children.

My friend cannot comprehend why we cannot just as easily receive the same (let alone ANY) treatment (or even respect) from the medical community when our kids are nearly the same exact story. Or why it's hard to secure IVIG when they get inumerable rounds at the neurologists encouragement. Plus 4 rituximab treatments from rheumatology, steroids then more IVIG.

She's realizes her child is lucky and will be sharing her story.

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So I don't understand it, either. Brain inflammation is brain inflammation, regardless of the underlying cause. Maybe if they changed the name of the disease to something more specific. When my daughter was hospitalized, I begged them to check for PANDAS. I said that I truly believed that could be PANDAS because this last big exacerbation started with the flu. They blew me off and told me that the flu wasn't strep-related so it couldn't be PANDAS. I told them to check for PANS then and they literally almost sneered at me like "Yeah, this mom just can't accept that her daughter has a mental condition." They would not even entertain the idea. Yet they could not find a reason why her sed rate was elevated and her pupils were HUGE and she was ocd, anorexic, raging, and delusional . Once I got her out, I begged our local doc for tests and that's when we found out her mycoplasm levels were high and she showed chronic myco, along with lyme, bartonella, HHV6, and we don't know about coxsackie yet but suspected. Amazing that she's better on antibiotics. So why do docs have this reaction? They never stated in the book what caused Susannah's either.

Edited by queenmother

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Did not read all the posts, so not sure if someone else told you this....but Susannah will be speaking on PANDAS radio I believe it is tomorrow night. If you are not familiar this is an online radio program run by a PANDAS parent and it typically has a question call in portion. Google radio pandas to find the link.

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My DS has the seizures, and was in horrendous condition, but definitely has underlying infection. I have not had him tested for NMDAR, but seeing as it is now a blood test, I will ask his doctor. He's doing well with abx, chiropractics, supplements, ART, but not quite there. He has also had several rounds of IVIG, and one PEX.

 

Just curious...what happens after she runs out of her $1 million in treatment? Isn't that the max her insurance will cover for anything?

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I recently finished the audio-book (took me 2 months and caused a ton of cognitive fatigue and crashes). But it was incredibly intriguing and interesting.

 

I think Susannah is super lucky to have been in NYC and see the doctors she saw.

 

I was most fascinated about the connection of psychiatric problems to auto-immunity. I was mis-diagnosed with just purely psych. issues for 10 years and put on hundreds of psych. meds and saw little to no benefit with any of them. So I'd really like to move forward with auto-immune treatment but was a bit shocked at the costs. I'm on medicaid now b/c I'm disabled so I don't know if they'd cover any of this stuff. That is really concerning to me.

 

I missed the radio broadcast but would like to listen to it some time, does anyone know if it will be online?

 

Also, are they finding any other cheaper auto-immune treatments for pandas these days? I know some CFS doctors are moving towards more treatments in this direction.

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So I don't understand it, either. Brain inflammation is brain inflammation, regardless of the underlying cause. Maybe if they changed the name of the disease to something more specific. When my daughter was hospitalized, I begged them to check for PANDAS. I said that I truly believed that could be PANDAS because this last big exacerbation started with the flu. They blew me off and told me that the flu wasn't strep-related so it couldn't be PANDAS. I told them to check for PANS then and they literally almost sneered at me like "Yeah, this mom just can't accept that her daughter has a mental condition." They would not even entertain the idea. Yet they could not find a reason why her sed rate was elevated and her pupils were HUGE and she was ocd, anorexic, raging, and delusional . Once I got her out, I begged our local doc for tests and that's when we found out her mycoplasm levels were high and she showed chronic myco, along with lyme, bartonella, HHV6, and we don't know about coxsackie yet but suspected. Amazing that she's better on antibiotics. So why do docs have this reaction? They never stated in the book what caused Susannah's either.

They have no idea what caused Susannah's reaction other than her mentioning that a man sneezed on her in the subway. They said they have no clue what causes anti-nmda either.

 

"Plus 4 rituximab treatments from rheumatology" --- this chemo drug is helping cure people with M.E./CFS - trials going on now and a lot of success stories - I think CFS is also an auto-immune disoder, which I unfortunately have as well. The immune system is attacking the CNS. There is no real treatment for CFS either and being a sufferer of it and knowing a lot of young patients myself (all my friends) it is one of the most torturous and disabling diseases on this planet. Ampligen helps a lot with some patients but the FDA refused it after 30 years of trials. The FDA refuses to do anything for us so most of us lie in bed all day long feeling like we are rotting and suffering so badly in pain and indescribable fatigue. I know a girl who's been bedridden for 15 years, so yes there is much frustration for many chronically ill patients and lack of treatment or research.

 

I've never really had the parental support I see here, my dad thinks I am malingering (even though he's not even around) and my mother is too busy working full time just to pay for my medical bills. It makes me sad......... Most young adult patients I know are just on their own, sad but true, we really can't even get out of bed we're so sick.

 

I wrote Dr. Najjar just to ask about some things, doubt I'll get response. It sucks that they don't even believe in pandas??? It's quite obviously a similar disorder. I could relate when she talked about severe cognitive fatigue and crashing after visiting with people.

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