Why don't we all write a book - a collection of stories

[becjonz]

I too would be willing to write something as well and to help with any other portion of it.

 

I too think that it needs a ray of hope at the end of the stories but also would need to be careful about offering medical advice. I would LOVE to see a resource section at the end for parents- doctors to contact, websites to visit, a bibliography of articles that would be informative. It would then provide a dual purpose for families to see themselves in the stories but also to offer some help or support too.

 

Due to the article about my son in our local newspaper we have heard of an ever increasing number of kids who have sought out evaluation for and diagnosis of PANDAS in our area. How cool would it be to have a book like this to give to these families as they are just starting out on this journey and searching for info.

[Mary M]

The Storycorps concept seems to work. http://storycorps.org/about/

I, for one, couldn't put their book down. I laughed, I cried...just people sharing a conversation over a question germane to their mutual experience. But the result is a compelling little piece of literature that revels in our collective humanity.

The books they've published combine certain stories by connected "themes". Whether or not the major theme of the illness of PANDAS would draw attention I do not know but it may be worth investigating.

 

I love that this group of families is so proactive. I was talking with my dad the other day about brainstorming a way for those of us on the forum to all walk together as a united front into the NIH to demand to be heard and for our childrens' medical conditions to be acknowledged. I was thinking that if we all banded together then somehow we could break down the roadblocks to diagnosis and treatment established by the medical community. I thought I needed to change the minds of the doctors. My dad quietly and patiently responded by stating that change would not come from attempting to squash the barricades within the medical system, rather, change would come when PANDAS parents shared their stories with the world.

 

We should all be so appreciative of those who have already been brave enough to share their stories (Lauren and Sammy, the boy who did the newspaper interview-I can't think of his name right now), Gary and his PANDAS website, the mom with the blog (sorry I can't remember the name of your blog right this minute)...perhaps it is time for the rest of us to stand strong, and share our stories....

Mary

from Michigan

[EmersonAilidh]

Howie Mandel won't get back. I desperately tried that route for the pepsi refresh contest.

 

Think it is an idea to consider. I have our experience documented daily in great detail and our ds10 began to write/journal his experience. He titled chapter 1 "The Day the Nightmare Began!"

 

Here are 2 other thoughts for raising money that I have been pondering for a few months.

 

#1) Getting in touch with Howie Mandel: OK, now that you have stopped laughing...he writes about how he remembers the day that his OCD began and that he was bit by a sand flea at the beach....Anyway, left me wondering if he had ever heard of PITANDS or PANDAS. Seems like a unique "cause" that would be something he may be pationate about. (How on earth do you get in touch with famous people?)

 

#2) I saw Warren Buffet's (Spelling?) sister on a talk show recently, she has this organization where people submit requests for money/donations and a group of her people review them all and decide whether or not to help. (I will look up the title of her book and name of the organization.) Maybe a few PANDAS stories to her fondation may get somewhere.

 

I know both of those idea are "out there", but they keep popping into my head. I just hate thinking of the kids that can not afford to get help! Keeps me awake at night!

Speaking of that, I should realy go to bed, it's past midnight. Goodnight

 

Haha! I'm sorry, but this made me laugh. I accidentally skipped forward in the conversation & I was like "Wait. Howie Mandel won't return someone's calls? WHAT did I miss?!"

[3boysmom]

I like the idea, and would be more than willing to contribute. I think doing something in the format of the "Chicken Soup" books might be worth considering. Since none of us writing have any real medical experience, I would be heistant to offer up any real "answers" - but sharing our stories - with both our struggles and successes, while focusing on a message of hope (like the "Chicken Soup" books) would work.

 

Also, my sister works for a publishing company. She's out of the country right now, but when she gets back, I can ask her about costs/options to get it printed as well.

 

 

 

When my ds10 was at his sickest, I noticed that he kept checking the same book out from the school library. The librarian came by my class and said that he would not check out anything else (he used to be an avid reader, reading many books a week). I told her that I would speak to him about it and when I asked to see the book, it was, "Chicken Soup for the Young Person (or Kids) Soul". He told me that when the intrusive thoughts were too much to handle, he would read a particular poem from the book. He said that he would read it over and over and it kept him going. I copied the poem for him and he carried it in his pocket.

 

OVERCOMING OBSTACLES

Don't be a coward, fearful and weak,

Be the last one to quit, and the first one to speak.

Don't hide your face from the light of day,

Be courageous in life and stay that way.

No need to run from your trials, troubles and problems,

Have confidence in your step as you reflect how to sove them.

Yet, if you happen to fall, don't lie there and die,

Get up without a thought, and hold your head up high.

Be wise, courageous, bold and brave,

And life will be worth living, from your birth to your grave.

-Jereme Durkin

 

 

One morning he woke up out of a fog and said, "I'm baaaaack and ready to write a Chicken soup for the PANDAS soul". So books, stories, poems, words, can be very helpful.

[3boysmom]

When my ds10 was at his sickest, I noticed that he kept checking the same book out from the school library. The librarian came by my class and said that he would not check out anything else (he used to be an avid reader, reading many books a week). I told her that I would speak to him about it and when I asked to see the book, it was, "Chicken Soup for the Young Person (or Kids) Soul". He told me that when the intrusive thoughts were too much to handle, he would read a particular poem from the book. He said that he would read it over and over and it kept him going. I copied the poem for him and he carried it in his pocket.

 

OVERCOMING OBSTACLES

Don't be a coward, fearful and weak,

Be the last one to quit, and the first one to speak.

Don't hide your face from the light of day,

Be courageous in life and stay that way.

No need to run from your trials, troubles and problems,

Have confidence in your step as you reflect how to sove them.

Yet, if you happen to fall, don't lie there and die,

Get up without a thought, and hold your head up high.

Be wise, courageous, bold and brave,

And life will be worth living, from your birth to your grave.

-Jereme Durkin

 

 

One morning he woke up out of a fog and said, "I'm baaaaack and ready to write a Chicken soup for the PANDAS soul". So books, stories, poems, words, can be very helpful.

[norcalmom]

We have everything we need for a book right here. We've all published our stories, if you follow the treads back for several years, you get a complete picture of many of the kids stories - good and bad. I think it would be compelling and unique if editted correctly. There are definatley some interesting characters, along with the kids pandas stories. Just an idea - I'm no writer but I read (alot) and I know what makes good reading...and I spend alot of time searching through the archives of this board (as we all do)! Admit it - you start looking for one thing and you get sucked into old threads that have little to do with your situation becuase they are so interesting.

[thereishope]

That would be a whole different book... maybe "Confessions of an Online support Forum Addict" Actually, a good idea at some point is "How an Online Support Forum Changed the Face of Psychiatry".

[3boysmom]

That would be a whole different book... maybe "Confessions of an Online support Forum Addict" Actually, a good idea at some point is "How an Online Support Forum Changed the Face of Psychiatry".

 

 

Where is the "Like" tab on this forum?

[forjpj]

Off the topic... but I think a great medical school project would be for some students to follow this forum for a lengthy amount of time and try to get a grasp on what it is really like for the families and document some of the struggles, issues, etc. We'll call it "A Day in the Life of a Pandas Family." Anybody got an in with a medical school? Wouldn't that be lucky?!!

[Mary M]

That would be a whole different book... maybe "Confessions of an Online support Forum Addict" Actually, a good idea at some point is "How an Online Support Forum Changed the Face of Psychiatry".

 

Oh Vickie...this could really be something. Even the PANDAS doctors admit that it is the parents of PANDAS children who have made the diagnosis and any of the three standard treatments (IVIg, PEX, abx) what they are today...the internet can be a sea of misinformation but with regard to PANDAS it is a lifeline in tumultuous waters.

[EmersonAilidh]

On that note, with some of the incredibly detailed medical articles that I've seen on Wikipedia, I think ours is in need of a little revamping. I remember the first day I looked up P.A.N.D.A.S. when I was first diagnosed, & the page was practically a single paragraph. It's definitely made progress but I think that there's a lot more information that could be on there, because I know from personal experience that the majority of people visiting that page are googling "P.A.N.D.A.S." for their first time.

 

http://en.wikipedia.org/wiki/P.A.N.D.A.S.

[KaraM]

I've been sitting back watching the replies and taking all the wonderful suggestions and ideas.

 

I agree, that the stories are all here, but to be honest with you, digging through all the posts, pulling it all together and writing a book is just something I could never accomplish.

 

Here is what I'm thinking:

 

Each person writes their child's/personal story. They could follow a template such as the following, or, if it's easier, write in a way they feel best fits their situation:

 

1. Beforehand/Background

2. Onset

3. Diagnosis/Misdiagnosis

4. Treatement Path

5. Recovery/Remission/Cure

6. Flare Up/Exacerbation

(repeat of any of above as needed)

7. Where we are today

8. Other thoughts

9. Doctors who helped

10. appendices with picutures, handwriting samples, etc (if not included write in story)

 

We could also have at the top of each page information about the child, such as:

 

Age of onset

Age of diagnosis

Age or recovery/remission

And a list of major/minor symptoms experienced/exhibited

 

Somewhere in the book, there could also be an index or chart with the symptoms experienced and the page of the story for children experiencing those symptoms.

 

In addition to the stories, we could also have other sections as well, including resources, etc.

 

Again, these are just thoughts. Like I said, I could never write a book, but I think I could pull a collection together with the caveat that my daughter does not go into exacerbation.

 

Kara

[Worried_Dad]

I think this is a cool idea! Not long ago, Sheila Rogers solicited stories from PANDAS forum members ( http://www.latitudes.org/forums/index.php?showtopic=6986 ). She and ACN have published some excellent stuff (like the Natural Treatments for Tourette's and Tics book LLM mentioned). Might be worth pinging her to see if she has any interest in this, or can provide guidance?

[momto2pandas]

I was recently thinking about this and looked at Amazon to think about format. I found the following about ADHD, compiled by surveys. Has anyone read this book? I wonder if the publisher/author might be interested in a book on another disorder, but using the same format.

 

The ADHD Parenting Handbook: Practical Advice for Parents from Parents [Paperback]

Colleen Alexander-Roberts

(Author)

4.7 out of 5 stars See all reviews (12 customer reviews)

12 Reviews

5 star:

(9)

4 star:

(2)

3 star:

(1)

2 star: (0)

1 star: (0)

 

› See all 12 customer reviews...

 

________________________________________

From Booklist

Attention deficit hyperactivity disorder (ADHD, aka ADD) affects a huge number of children; the estimates of experts are truly impressive--five million school-age children and 5 to 10 percent of the general population. Subtitled "Practical Advice for Parents from Parents," here's a book filled with the experiences of hundreds of parents of ADHD children gathered via surveys by the author. ADHD, a condition marked by distractibility and impulsive and related behavioral symptoms, is defined briefly, and insight into the diagnostic process follows. Then, the author focuses on management techniques that a family and child can utilize to survive everyday life--morning activities, homework, peer relations, summer-vacation blues. Tips from educators and other professionals are tucked in, especially throughout the lengthy chapter on school and teachers. Appended, along with a bibliography, is a list of ADHD organizations. Denise Perry Donavin

[EmersonAilidh]

I've been sitting back watching the replies and taking all the wonderful suggestions and ideas.

 

I agree, that the stories are all here, but to be honest with you, digging through all the posts, pulling it all together and writing a book is just something I could never accomplish.

 

Here is what I'm thinking:

 

Each person writes their child's/personal story. They could follow a template such as the following, or, if it's easier, write in a way they feel best fits their situation:

 

1. Beforehand/Background

2. Onset

3. Diagnosis/Misdiagnosis

4. Treatement Path

5. Recovery/Remission/Cure

6. Flare Up/Exacerbation

(repeat of any of above as needed)

7. Where we are today

8. Other thoughts

9. Doctors who helped

10. appendices with picutures, handwriting samples, etc (if not included write in story)

 

We could also have at the top of each page information about the child, such as:

 

Age of onset

Age of diagnosis

Age or recovery/remission

And a list of major/minor symptoms experienced/exhibited

 

Somewhere in the book, there could also be an index or chart with the symptoms experienced and the page of the story for children experiencing those symptoms.

 

In addition to the stories, we could also have other sections as well, including resources, etc.

 

Again, these are just thoughts. Like I said, I could never write a book, but I think I could pull a collection together with the caveat that my daughter does not go into exacerbation.

 

Kara

 

This is the suggestion that I like the most so far! Although, I think that if we do include the age on onset/diagnosis/etc... we should also include the year.