Re: GUidebook arrival date

[Guest guest]

Stella, I am not sure, I am giving myself until December. I have

almost finished entering all of the data into Excel, sorted by

subject and article number. Then I will begin writing. But the

production layout, revisions, all that computer stuff, that will

take probably 2 months. So I am hoping that I can get the first

draft written by August, and go from there.

> > Hello everyone -

> >

> > I am going to print below the first draft of the outline of

> the " PhD

> > Dissertation on rSS/SGA that I am writing. " Just kidding,

> although

> > it certainly feels like my dissertation!

> >

> > I have finished reading all the medical journal articles to

date,

> > and have now drafted the first outline of what would be included

> in

> > our MAGIC RSS/SGA GUIDEBOOK. (really need help in naming it).

> >

> > This Guidebook will cover A-Z on the subject of RSS/SGA. It

will

> be

> > a magazine style, four color and include photos, charts and

> personal

> > stories. This will also be written from an academic standpoint,

> > endnoting all studies (about 100 studies referenced).

> >

> > If you are interested, I would love it if you could do the

> following:

> > a) read through this and see if I am missing anything you as a

> > parent would want to see in this Guidebook

> > send me comments privately at magicrss@ mindspring.com

> > c) also, a volunteer will collect " helpful hints " that will be

its

> > own section (for example, best clothing places, etc).

> >

> > Here you go. Let me know. This is first draft only.

> >

> > COVER: A collage of more stereotypical photos; mix of races

and

> > ages

> >

> > INSIDE FRONT and BACK COVERS: zillion different photos of

various

> > RSS and SGA kids, marked with borders and with RSS or SGA or

> > RSS/SGA? Written in each child's photo box

> >

> > DIAGNOSIS/GENERAL INFO

> > • Rss vs SGA vs IUGR

> > PHOTO: stereoptypical RSS & SGA Children

> > • Incidence rates

> > • Available testing to see if RSS

> > • How diagnose?

> > • Birth and adult untreated measurements data

> > • Genetics of …

> > • General touch upon health risks of being born SGA

> >

> > CHARACTERISTICS/PHENOTYPE

> > • probably list in a box all the characteristics with

> > occurrence rates

> > • then describe more in-depth the individual characteristics

> > with complete information on each

> > PHOTOS: show photos of various key features – ears, forehead,

> > downturned mouth, asymmetry

> > (do we go into details here on each characteristic, like

> asymmetry –

> > what is it, how does it effect, what options are and does it

make

> > scoliosis – it could be a whole page just on that).

> >

> > PERSONAL STORY

> >

> > MatUPD7 vs normal UPD7

> > * describe difference

> > PHOTO: matUPD7 child

> >

> > RSS GROWTH STAGES (intrauterine, infancy, childhood, adolescence)

> >

> > WEIGHT

> > • Why it is so hard for these kids to gain weight; theories

> > • Hypoglycemia risk; why? How to prevent

> > PERSONAL STORY

> >

> > FEEDING PROBLEMS/APPETITE

> > PHOTO: Before & after G-tube photos

> > • Nutrition/formula information (maybe put a whole addendum

> > section on nutrition tips)

> > • GI problems (reflux, delayed gastric emptying,

> > constipation)

> > • Treatment/solutions for managing GI problems (meds, food,

> > surgery (g-tube, pyloropl, nissan)

> >

> > CHARTS: Dr. H's graphs showing improvement on Periactin, etc.

> >

> > COGNITIVE/INTELLECTUAL

> > • summary of studies on cognitive/intellectual

> > • summary on psychosocial/self concept

> > • hints at ADD/ADHD & autism like spectrum

> > PERSONAL STORY

> >

> >

> > HEIGHT

> > • GH deficient or Insufficient

> > • Entire summary of the IGF-1 stuff – NEED WRITER

> > • Studies indicating no need for GHD stim testing

> >

> > TREATMENT – GROWTH HORMONE

> > • only one method for increasing height, growth hormone

> > CHART: graph showing signi effect

> > • Benefits/Adverse effects

> > • Dosing

> > PHOTO: before & after photos of GH height increase

> > • Gain in height; final adult height

> > PERSONAL STORY

> > • Predictors of success

> > • Impact on bone age and puberty

> >

> > PUBERTY

> > • what happens? Postpone?

> > • Adrenarche vs actual puberty

> > PERSONAL STORY

> >

> > ADULTHOOD -

> > LONGTERM HEALTH RISKS OF BEING BORN SGA

> > • insulin resistance

> > GROUP PHOTO of RSS adults

> > • obesity – risk of linked to being born shorter not thinner

> >

> > ADULTHOOD – General

> > PHOTO: Possibly use photo of adult as toddler & now as adult

> > • life isn't RSS any longer; just a part of who they are

> > • typical life/personal/work accommodations for short statured

> >

> >

> > ILLNESSES/EMERGENCY TREATMENT

> > • outline steps that a parent should take if child can not eat

> >

> > ANESTHETIC MANAGEMENT

> > • outline steps that a parent should ensure if child is having

> > anesthesia

> > PERSONAL STORY

> >

> > SCHOOL/THERAPY

> > • Early intervention

> > • School IEP vs 504 – typical accommodations

> > • Treat your child their age not their size

> > PHOTO: Kid doing great athletic something

> >

> > PARENTS' HELPFUL HINTS

> >

> > COMPLETE NUTRITIONAL TIPS