First outline of RSS/SGA Guidebook

[Guest guest]

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

[Guest guest]

This outline is really just outstanding! I truly cannot wait to read it.

When you have an unusual diagnosis, I would think that most people are just so

happy to find any written thorough piece of information on what they are going

through. Great Job !

[Guest guest]

,

The outline looks wonderful. How in the world do you find the time?

Judith, Steve, (RSS) and Rebecaa (non RSS) 4 year old twins

[Guest guest]

-

Wow. Where were you 23 years ago, when I was just diagnosed and,

except for a half-dozen Journal of Pediatrics entries, we had NO

informtion about RSS?

Bravo!

-Sharon-

Just an RSS kid who grew up

38Y,2M, 4'6.75 " , 94# (was 93 for a day, 2 weeks ago...I haven't

weighed that little in about 10 years!)

[Guest guest]

Your outline looks great, when will be able to buy a copy of this

great book.

Stella Mother of Gaby 1 1/2 yr RSS and Andres 5 yrs non-rss and

Amani 6 yrs. old non-rss

> 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