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Books on PANDAS


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I have not come across any books about PANDAS except for a brief mentioning in some OCD books.

 

There is another book on the market in which many believe , in hindsight, the boy had PANDAS. It's not a medical book, though. It's titled "Against Medical Advice" by James Patterson. I have not read it since I still have a hard time reading books about kids suffering like my son. Too soon for flooding of memories. Anyway, it won't offer med info for PANDAS but I have heard it is a good book.

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I did read this book. Well actually skimmed through it. I'm not one to read stuff (or watch movies) about kids suffering either but this one was from the boy's perspective and some of his own stories were funny. Of course I had to first skip to the end to make sure he was okay now and then I read it!

 

I might run to Borders today and poke through their medical books. I am trying to understand the whole immune system and antibodies, etc. I was never good at science so this journey is really confusing to me. I see how much you and all of the others on this board know and I just feel so far off from having that knowledge. It's frustrating but I will keep trying!

 

I have not come across any books about PANDAS except for a brief mentioning in some OCD books.

 

There is another book on the market in which many believe , in hindsight, the boy had PANDAS. It's not a medical book, though. It's titled "Against Medical Advice" by James Patterson. I have not read it since I still have a hard time reading books about kids suffering like my son. Too soon for flooding of memories. Anyway, it won't offer med info for PANDAS but I have heard it is a good book.

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Since my son's "Great Exacerbation of 2009," I've been combing the shelves at our local bookstore . . . Barnes & Noble . . . for ANYTHING new on the topics of PANDAS and/or OCD I haven't already read. "Saving Sammy" was the only new "resource" I could find. Given the growing discourse on the topic, though, that's not to say there aren't more in the works or a perhaps some coming via international routes, maybe?

 

If you find anything, please post! Thanks!

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Don't worry. In a month or so you'll be rattling off info to the new 'newbies". My son's first exacerbation was in Sept 08. I've been reading this forum almost every day since I joined in April 09. So, it's been a while.

 

Actually, Dr T did mention a book recently he suggested. I don't think it was directly about PANDAS, but he did suggest one. I'll find the link.

 

 

I see how much you and all of the others on this board know and I just feel so far off from having that knowledge. It's frustrating but I will keep trying!
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Don't worry. In a month or so you'll be rattling off info to the new 'newbies". My son's first exacerbation was in Sept 08. I've been reading this forum almost every day since I joined in April 09. So, it's been a while.

 

Actually, Dr T did mention a book recently he suggested. I don't think it was directly about PANDAS, but he did suggest one. I'll find the link.

 

 

I see how much you and all of the others on this board know and I just feel so far off from having that knowledge. It's frustrating but I will keep trying!

 

The book I mentioned was about Streptococcus itself.

 

I'm sad to say there is no medical textbook on PANDAS, something written by doctors for doctors. I want to write or edit one. Long overdue.

 

Does anyone want to help me? Work in the publishing field?

 

Dr. T

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It was a book about strep. Sorry, not exactly what you were looking for.

 

http://www.latitudes.org/forums/index.php?...ic=6743&hl=

 

This is what I am reading these days.

 

It's the best book on Strep that I have been able to find. I bought a used copy (that looks brand new) for about $65. What a bargain!

 

http://www.amazon.com/Gram-Positive-Pathog...8284&sr=8-1

 

 

Dr. T

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Don't worry. In a month or so you'll be rattling off info to the new 'newbies". My son's first exacerbation was in Sept 08. I've been reading this forum almost every day since I joined in April 09. So, it's been a while.

 

Actually, Dr T did mention a book recently he suggested. I don't think it was directly about PANDAS, but he did suggest one. I'll find the link.

 

 

I see how much you and all of the others on this board know and I just feel so far off from having that knowledge. It's frustrating but I will keep trying!

 

The book I mentioned was about Streptococcus itself.

 

I'm sad to say there is no medical textbook on PANDAS, something written by doctors for doctors. I want to write or edit one. Long overdue.

 

Does anyone want to help me? Work in the publishing field?

 

Dr. T

 

 

The strep book is nervewrackingly dense! It is likely great if you have a medical background, just as a warning for laymen like me. I ordered it (found a used one) and am SLOWLY starting to read it. I agree, a book would be wonderful - more focused on the medical side of PANDAS rather than the antidotal story.

 

I have to say that while "Against Medical Advice" is a great read, it is heartbreaking to a PANDAS parent. You want to scream "PANDAS, PANDAS" the entire time. Maybe not, but that poor kid was born at the wrong time. On the positive side, he is doing very well today. But what a way to get there. PANDAS is not mentioned or considered for this child - but it started before Swedo began the miracle of diagnostic criteria. Be sure you are ready to cry and rage when you read this one. It will completely enrage you about the levels of medications that he is given that clearly hurt him even more. A couple of scenes gave me cold chills.

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Are there any good books on PANDAS? I read "Saving Sammy" but I'm wondering if there is more of a medical book explaining PANDAS in more detail.

 

Justine

 

Here's something that I found helpful in understanding one piece of the puzzle. It's not specific to Pandas, but it explains the cytokine storm, the over-reaction of an immune system that's watched too many Rambo and Terminator movies...

 

http://www.fluwiki.info/pmwiki.php?n=Scien...erCytokineStorm

 

You can then piece together what happens when strep and molecular mimicry come into play, read a little on what the basal ganglia does (think of a pool filter that sorts the dirt from the important data coming into the brain) and you get a very layman's understanding.

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"Against Medical Advice" was much more riveting for me than "Saving Sammy". Of course PANDAS wasn't mentioned but I was thinking the whole time that he probably did have PANDAS.

 

"Against Medical Advice" is really a great example of the nightmare an undiagnosed PANDAS kid (and family) can go through.

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I did read this book. Well actually skimmed through it. I'm not one to read stuff (or watch movies) about kids suffering either but this one was from the boy's perspective and some of his own stories were funny. Of course I had to first skip to the end to make sure he was okay now and then I read it!

 

I might run to Borders today and poke through their medical books. I am trying to understand the whole immune system and antibodies, etc. I was never good at science so this journey is really confusing to me. I see how much you and all of the others on this board know and I just feel so far off from having that knowledge. It's frustrating but I will keep trying!

 

I have not come across any books about PANDAS except for a brief mentioning in some OCD books.

 

There is another book on the market in which many believe , in hindsight, the boy had PANDAS. It's not a medical book, though. It's titled "Against Medical Advice" by James Patterson. I have not read it since I still have a hard time reading books about kids suffering like my son. Too soon for flooding of memories. Anyway, it won't offer med info for PANDAS but I have heard it is a good book.

 

"Against Medical Advise" is a great book. I read it about a year ago. I know what you mean about it being too soon to read books like this. I cried my eyes out in the end. I looked into the Hospital Cory, the boy this story is about, and I can't find it anywhere. I don't know if they changed the name. I think he probably had PANDAS too. He woke up one day at 5 years old with an uncontrollable urge to shake his head. I wonder what his father, Hal Friedman, Co Author thinks about all of this current information on PANDAS.

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Don't worry. In a month or so you'll be rattling off info to the new 'newbies". My son's first exacerbation was in Sept 08. I've been reading this forum almost every day since I joined in April 09. So, it's been a while.

 

Actually, Dr T did mention a book recently he suggested. I don't think it was directly about PANDAS, but he did suggest one. I'll find the link.

 

 

I see how much you and all of the others on this board know and I just feel so far off from having that knowledge. It's frustrating but I will keep trying!

 

The book I mentioned was about Streptococcus itself.

 

I'm sad to say there is no medical textbook on PANDAS, something written by doctors for doctors. I want to write or edit one. Long overdue.

 

Does anyone want to help me? Work in the publishing field?

 

Dr. T

 

I have two contacts, one in publishing and one is an author with six books to his credit. Both are aware of the journey my son and I have been on for the past years. I have emailed them both.

 

Gat's mom

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