Le book outline (for those who need it) :)

[LIZARD]

Hydrocephalus: All You Ever Wanted or Needed to Know, for the Beginner to the Seasoned Veteran

I. Hydrocephalus 101: Types, Causes, and Other Classic Questions Answered
A. Communicating? Non-Communicating? What’s the Diff?
1. Types of Communicating Hydrocephalus
2. Types of Non-Communicating Hydrocephalus
3. The “Diff” and Why it Matters

B. How’d I Get This Thing? What Does It Mean For Me or My Child?
1. Causes of Various Types of Communicating Hydrocephalus
a. Infections
b. Too Much CSF?
c. Everything Else

2. Causes of Various Types of Non-Communicating Hydrocephalus
a. Congenital causes
1. Malformations of the brain
2. Congenital cysts and tumors
b. Acquired causes
1. Injuries
2. Stroke
3. Intraventricular Hemorrhage
4. Infections

II. This Thing Inside My Head: All About Shunts, from A to Z
A. Pressure valves and what they mean
B. Programmable? Non-Programmable? How to Know?
C. What’s in a name: Knowing the brand name of your shunt and why it matters

III. Do I Have to Have a Shunt?
A. Third Ven-somethingorother: Third Ventriculostomy for the selected few
B. Isn’t There a Pill? (Well…Sorta)
C. Other Alternative Treatments

IV. The First 20 Questions to ask the Neurosurgeon

V. Shunt Surgery: Everything You Should Know as a Parent or Patient
A. Getting Ready
B. The Big Day
C. Recovery

VI. Shunt Revisions: All You Need to Know: “Treatment” vs. “Cure”
A. “You Mean I’ll Need to Do This Again? Shunt Revisions: Signs and Symptoms
B. Moving Forward—Again
C. Complications
1. Infection
2. Catheter Migration
3. Pseudocyst

VII. Preemies with Hydrocephalus
VIII. Prenatal Diagnosis

IX. Seizures, Migraines, and Other Annoyances That Can Accompany Hydrocephalus
A. Seizures
1. Absence seizures
2. Simple Partial seizures
3. Complex Partial seizures
4. Grand Mal seizures
5. Other seizure types
B. Migraines
C. Ataxia and Balance Issues
D. Fine and Gross Motor Deficits
E. Cerebral Palsy
F. Slit/Non-compliant Ventricles

X. Vision Issues Associated with Hydrocephalus

XI. What Can I Do? What Can I Not Do?
A. The importance of taking care of yourself
B. Know your limits, ‘cause we’re all different in our own way
C. To live in fear is not living!

XII. Talking to Friends and Family About Hydrocephalus
A. So many questions, so little time: A crash course for loved ones
B. Where to turn when they “don’t get it”
C. What family and friends can do to help

XIII. When People Around You “Don’t Get It”

XIV. IFSPs, EIPs, IEPs, 504s, and other keys to education and services
A. Neuropsychological tests and other ways to determine weak areas in children with hydrocephalus
B. Common learning issues associated with pediatric hydrocephalus
C. What type of educational help does my child need?
D. 504 Plans: When you just need that extra bit of help

XV. Adult Onset Hydrocephalus
A. I’m 35 years old! How could I have this now? All About SHYMA (Discuss “Idiopathic”)
B. My dad was just diagnosed with this. I thought only babies had it! NPH 101

XVI. Growing Up with Hydrocephalus
A. Can I drive?
B. I want to go to college, but…
1. Finding the right school
2. The ADA, scholarships, and other help

XVII. Grownups with Hydrocephalus: Making Your Way in the World
A. Facing the Real World: Employment
B. Insurance
C. Dating, Intimacy, and Marriage

XVIII. Making a Family
A. Q + A on Pregnancy with Hydrocephalus
B. Labor and Delivery: What every mom with hydrocephalus should know
C. Being Mom or Dad with Hydrocephalus
1. Surgery, Seizures, or Migraines when you have a little one
2. When your child has a medical problem
3. Taking care of yourself and why you must put yourself first
D. Telling Your Kids About Your Hydrocephalus
1. Preschoolers
2. School-aged children
3. Junior high and high school children
E. Your Spouse and Your Hydrocephalus

XIX: “But You Don’t Look Sick…”
A. Educating society about hydrocephalus as a chronic health condition
B. Dispelling the Invalid Mentality and Striking a Balance

XX: When a Sibling Has Hydrocephalus

XXI: “We Were Told Hydrocephalus Wasn’t Genetic, But…”: X-linked Hydrocephalus

XXII. What We Still Don‘t Know

XXIII: Tying It All Together

[Kelly]

Hi Lizard,

First of all, thanks for the link to this site.

Is this a published book? Or one you are working on? The outline looks very informative!

Have a great day,
Kelly :)

[LIZARD]

Hey, Kelly. :)

It's in the early stages of planning at the moment. There are lots of chapters that haven't been "taken" yet, but a bunch of us from the original BT site are collaborating on it. If you're interested, let me know. :)


LIZARD :)

[sierras mommy]

Hey Lizard,

I would love to know more about this book. I am always looking all over for mmore info on hydro and if this book is it hey I am all over it, lol!:) :) :)

[LIZARD]

I'm sorry that I can't recall who was doing what chapters, but I can tell you that a number of them haven't been "taken," so let me know if you're interested in one (or more). I plan on the chapter on making a family and probably at least one other. If anyone remembers, feel free to post! :)



LIZARD :)

[MegNJaxMom]

If I remember correctly I was going to do something about in-utero dx, and seizures and hydro (or at least part of it!)...

[suecr]

Hi welcome back!! I already did the outline on causes.

[kathleenandjoe]

I will fill in and write chapters that are in need toward the end - I know those will be the hardest to get done.

I will work on the complex, simple partial ones - as well as the surgery prep-type ones in the next couple of months. Do we have any kind of timeline to meet as of now?

Thanks,
Kathleen

[Ripplegirl99]

Hello Everyone,

I wanted to do a chapter on service animals. Like seeing eye dogs dogs for people in wheel chairs and for people with seizures ect.

Ripplegirl99

[Spiritgal]

I'm happy to contribute to the adult onset section and employment section too as that's been a journey for me! Aren't our neurosurgeons gonna be impressed? :D This is brilliant, Lizard. Good on you!:cool:

[LIZARD]

I'm happy to contribute to the adult onset section and employment section too as that's been a journey for me! Aren't our neurosurgeons gonna be impressed? :D This is brilliant, Lizard. Good on you!:cool:


Thanks, hon'! :)

If you got anything else you want included, just holler.



LIZARD :)

[LIZARD]

Hey, Y'all. :)

I have been asked about the book by a couple of you. There are still many unclaimed chapters, so we need to determine who's gonna do what. If everyone who signed on to do one (or more) would post and remind me, we'll get a list compiled so everyone knows what's left. The outline, for anyone who needs a refresher, is here:

http://forums.braintalk2.org/showthread.php?t=205


Thanks!

LIZARD :)

[Braindrain]

that I was doing this one:

XIII. When People Around You “Don’t Get It”

(I hope I got that right):o

[lauren'smom]

Hey Liz.....I would be able to do one on hydro caused by Shaken Baby Syndrome (I think) if you have a need for that, let me know...

Debi (who is back on WW because of you)

[LIZARD]

Hey Liz.....I would be able to do one on hydro caused by Shaken Baby Syndrome (I think) if you have a need for that, let me know...

Debi (who is back on WW because of you)

That'd be great. So..back on WW, tossin' the Not-So-Special K?? :D You are gonna love it!!! I lost another .6 today for an even 82 fat, ugly, gross pounds GONE FOREVER!!!!!!!!!!!! BBBBBBWWWWWWWWAAAAHHHHHHHHAAAAAAAAA!!! :D


LIZARD, shrinkin', shrinkin' shrinkin'!!!!!!

P.S. I was talking with my (awesome!) leader today, and she said I should think about becoming a leader after I get to goal. Whatchathink???? :D

[lauren'smom]

actually, I am a lifetimer...but thought spe-k would work for a few pounds....I think you would make a great leader!!! go for it, how many more pounds till your goal????

[LIZARD]

actually, I am a lifetimer...but thought spe-k would work for a few pounds....I think you would make a great leader!!! go for it, how many more pounds till your goal????

I still have to actually determine a goal. I'm a long way off yet--probably another 65-75 lbs. At least I'm more than halfway! :D


LIZARD, shrinkin' an' lovin' it! :D

[pinhead]

Wow--What a great outline Lizard! It's very comprehensive, but what I love
most about it is that it is a community endeavor. Very cool! I have a suggestion or two--feel free to disregard--

* Maybe separate the chapters for adult H and infant/childhood H--
I don't know much, but I was thinking the issues might be different
to address them in their own chapters.

* A section on what patients have tried to help the condition that
may not be mainstream, i.e., accupuncture, natural remedies, etc.

I can give you some guidance on the marketing plan and self-publishing
if you you choose to gothat route.

I'm in awe of all of you! :)
love, -julia

[LIZARD]

Wow--What a great outline Lizard! It's very comprehensive, but what I love
most about it is that it is a community endeavor. Very cool! I have a suggestion or two--feel free to disregard--

* Maybe separate the chapters for adult H and infant/childhood H--
I don't know much, but I was thinking the issues might be different
to address them in their own chapters.

* A section on what patients have tried to help the condition that
may not be mainstream, i.e., accupuncture, natural remedies, etc.

I can give you some guidance on the marketing plan and self-publishing
if you you choose to gothat route.

I'm in awe of all of you! :)
love, -julia

Hey, Julia. :)

These are great. Thanks! I will make sure we include them.


(((((((((HUGS))))))))))),

LIZARD :)

[CoolAngel26]

What about absentmindness on weekends?Could that be a problem with hydro..Also weekend laziness..:) :D

[Braindrain]

What about absentmindness on weekends?Could that be a problem with hydro..

Just on weekends?? You're kidding, right??:p :D

As for laziness, that's easy to explain: your "get up
and go" got up and went!:D

[Mom2heathandkynzer]

Liz...I would love to help with the preemie's with hydro if that one isn't taken! Just let me know.

[LIZARD]

Liz...I would love to help with the preemie's with hydro if that one isn't taken! Just let me know.

I really can't remember...:o Sounds cool to me, though. :)



LIZARD :)

[CoolAngel26]

OK,we need a separate thread for the chapters that are assigned,and also the ones that we think of later on.Anyone wanna start that thread?I'm logging off to take a siesta...:D

[LIZARD]

Yeah, not a bad idea. I'm on it. :)




LIZARD :)

[LIZARD]

Hey, everyone. :)

Please refer to the book outline here:

http://forums.braintalk2.org/showthread.php?t=205

and let us know which part you're contributing to so we can determine which chapters or sections are still open. I plan to do chapter 18 (Making a Family). When everyone who has signed in lists what s/he is writing, we'll know what still needs to be claimed.


Thanks!

LIZARD :)

[Mom2heathandkynzer]

I'll do the preemie one...if it's not taken...and if it's taken I will help whoever has it if they want. Just let me know! I think this is a great idea!!
Anita

[suecr]

Liz, as you know I am covering the "causes chapter"

[Cyjon]

I signed up for the vision chapter as well as any other chapters that are needed. I'd probably be best with the medical chapters, but I'll do anything needed.

I also volunteered to start querying publishers.

What have I actually DONE? Pretty much jack at this point. I did a first pass and got a list of about 30 publishers to look at more closely. And...um...I've had lots of good intentions ;)

Andy

[LIZARD]

LOL, Andy! :D

I'll be honest...my chapter is more-or-less written in my head, but I have yet to put anything on paper yet. :o Don't feel bad. :) I think we all just need to regroup.




LIZARD :)

[Nat Hyland]

primarily on infections and hemmorhage if you like. I have done quite a lot of research on meningitis, as you can probably imagine :rolleyes: !

Nat.

[Ripplegirl99]

I am going to do a chapter on service dogs.

Ripplegirl99

[Spiritgal]

I think I agreed to do the adult onset section if no one else had taken it. Although that won't be covering NPH as that's not the form that I have. I just got hydro with no known cause. Typical. :)

[Noah'sgrandma]

I would love to help on this just not sure where I could help, I don't know that I could do a whole chapter but I want to contribute. Please let me know where I might help, I do know some about multiple shunts, numerous revisions, stress, support and play. Aggie

[LIZARD]

I would love to help on this just not sure where I could help, I don't know that I could do a whole chapter but I want to contribute. Please let me know where I might help, I do know some about multiple shunts, numerous revisions, stress, support and play. Aggie

How 'bout a section (part of a chapter) on grandparents and other family members? :) We can find a place for it.


LIZARD :)

[Noah'sgrandma]

Thanks, Liz that will be good, I will start woking on it, do you have a deadline set? Aggie

[LIZARD]

We don't, actually. There are lots of unclaimed chapters yet. Earlier in the thread, I posted the link to the outline. If any of those interest you, let me know. :)



LIZARD :)

[MegNJaxMom]

I wanted to do something on in-utero dx, and seizures and hydro. I haven't had time to look at the outline again, is that ok? I also have NOTHING written... so I am so glad to know I am not the only one that hasn't made much progress. I think about what I want to say a lot, but with school and work, I am too busy writing about stupid art history (BORING).

[monicad1974]

I know you have your outline done but I was reading on the livin'with site and a lot people don't understand about magnets and affecting their shunt. I may not completely.

Liz,
Funny thing happened. I was reading your outline and saw Aquired Hydro... I thought Aww!! She's doing that one for me... Then I thought duh!! other people have aquired hydro... But I do think Joy is the only other person in NC with hydro.

[CoolAngel26]

I think I was going to cover Employment issues and Hydro,but,I would also like to include a section on "Clueless" family members...Any thoughts,Liz??

[CoolAngel26]

What if we stickified this thread??I think this topic is really going somewhere...:)

[CoolAngel26]

We need to stickie this thread...seems like you guys are on to something,here.:)

[CoolAngel26]

Okay,it's stuck..

[LIZARD]

We need to stickie this thread...seems like you guys are on to something,here.:)


Agreed...Doc John?? Purty please? :D



LIZARD :)

[CoolAngel26]

LIZARD,

Please read my thread entitled...meet the newest member of the mod squad..If you would like,I will stickify both of your book threads after
dinner.Please let me know.

[CoolAngel26]

To stickie or not to stickie...that is the question...:D :D

[CoolAngel26]

Are we going to stickify this??

[LIZARD]

I'm thinkin' this'll be a unanimous vote...at least, I hope so!





LIZARD :)

[LIZARD]

Please do! I 'preciate it so much!



LIZARD :)

[LIZARD]

Are we going to stickify this??

I'm in! Anyone else??



LIZARD :)

[KathiDG]

I'm in with whatever you need me to do. Just let me know.

[CoolAngel26]

Let's allow this thread to run until Monday...if we get enough yeahs on this,then I will stickify the threads,deal?

[CoolAngel26]

Would you like me to merge all of the book threads into one big stickie??

[KathiDG]

Great idea...then it's less confusing for me...I'm still trying to figure out who's doing what so I know what's left.

[LIZARD]

Would you like me to merge all of the book threads into one big stickie??

Not a bad idea, methinks. :) Anyone else??



LIZARD :)

[LIZARD]

Okay...

Everyone's life is nuts now, with the holidays and all, so we can touch back after the New Year, but I'm just wonderin'...where are we on it? Andy, you still out there? I know we still have a number of chapters to get covered, too. I'll comb through this thread and try to make a list of who's doing what so we can get the other chapters covered and get goin'.


Whatcha''ll think??

LIZARD :)

[LIZARD]

Lemme know if I screwed any of this up:

Chap 1: Sue (Types and Causes)
Chap 2:
Chap 3:
Chap 4:
Chap 5:
Chap 6:
Chap 7: Anita (Preemies)
Chap 8:
Chap 9: Kathleen (seizures) **We also have other issues here. K, did you want to cover them, too (migraines, Ataxia, Fine and Gross Motor, CP, Slit/Stiff vents)?**
Chap 10: Andy (Vision Issues)
Chap 11:
Chap 12: Aggie (grandparents perspective on talking to family and friends) We still need the other parts of the chapter covered, too! :)
Chap 13: Kris, Gina (When People Around You Don't Get It)
Chap 14:
Chap 15: Spiritgal (adult onset). We need NPH in here, too. Are you up to that?
Chap 16: Growing Up with Hydrocephalus
Chap 17: Gina, Spiritgal (employment, insurance). We need dating and intimacy here, too.
Chap 18: Me (Making a Family)
Chap 19:
Chap 20:
Chap 21:
Chap 22:
Chap 23:

Okay....That's what I have. Anyone willing to take on any others, please let me know, okay?


Merry, merry christmas, happy Hannukah, Kwanza, and whatever else I may have left out, and happy 2007!!!!!!!

LIZARD :)

[LIZARD]

Hate my brain some days...That's "Who's doing what." :o



LIZARD :)

[CoolAngel26]

Hate my brain some days...That's "Who's doing what." :o



LIZARD :)

You're human,Liz,your not alone,we all feel like that some days.;)

[OneMoreTime]

I am going to do a chapter on service dogs.

Ripplegirl99

Dear Ripple ...

I am so excited to find out about this cooperative venture book and so happy to see that you have taken on the Service Dog chapter. If I can help in any way, do ask.

Don't overlook the issue of Support Dogs, too. Service Dogs, like guide dogs, physical support dogs, those who fetch needed items, pick up dropped things, provide signal services and more are special special animals.

But sometimes while a Service Dog is not specifically needed or cannot be obtained, an Emotional Support Dog may be a valuable "quality of life" addition to a patient's life. When deemed important enough to a patient to be prescribed by a physician, they are also protected under most (not every single one) right of access federal laws and regulation, including guaranteed right to live with you, even in government subsidized housing. The only deal-breaker is a unit that is only 2-4 units.

Teri