Re: answer to re dr binders

[Guest guest]

Absolutely do it now! I thought we may have had handouts at the

convention describing the typical " binders " that most physicians

appreciate.

However, what I have learned is that truly only your " captain " and

the pediatrician need to have such comprehensive binders. You

should keep the primary binder with all information -- each time you

leave a doctor's office, ask for a copy of the lab results, or the

physician's summary, etc.

But in creating the " binders " you have two main options. One is to

actually use a real binder -- using tabs to divide the sections.

Another is to use what the physicians use -- they are called

classification folders (often used for legal) and have 2-hole prongs

at the top. You can get different sizes. They are typically brown

and heavy cardboard and have, for example, 3 hard sections, each

with prongs on both sides. These are the types of folders

physicians are used to.

You would create a LABS/TESTS section. This would most easily just

be sorted by most recent result first.

You can then have sections by " specialist " -- GI, ENDO, GENETICs,

ORTHOPEDICS, etc.

I also have a section called " DEVELOPMENTAL " -- where I keep all

records of speech, etc.

Then I have the section of GROWTH/FAMILY. Here is where I keep the

growth charts, photos of as a baby that show the

more " typical " RSS look and how she has grown over the years. I

keep the standard RSS pamphlets here, but you could have a separate

section for " RSS/SGA INFO " .

Most specialists do NOT want an entire binder on the child -- they

would appreciate the RSS pamphlets alone. However, whoever you

choose to be the " captain " of the ship (who is driving your child's

care) -- this person would have everything.

But most importantly, ALL parents, YOU have a copy of this. Sadly,

the binders are a great way of introducing your child to the new

physician. HOwever, most physicians (except the captain) do not

want the ongoing pile of papers. However, every parent should have

a binder on your own child.

I myself get behind on this --every 6 months or so, I reorganize;

call for records, etc. But it is very important that anytime you

are at a physician appt, you have this binder so that if someone

asks you a question, BAM, you have your answer.

What else. Oh, I will send it in a separate email.

Jenn

> > Hello everyone -

> >

> > Thanks to so many of you who are already planning your Walk for

> > MAGIC walkathons. Exciting!!!! Katy and I will be mailing

> everyone

> > a letter (if you are a member of MAGIC or are in our database) --

> > but wanted to give you the good news here.

> >

> > I am going to be taking a four-month " leave of absence " from my

> role

> > as the co-division consultant (business development &

fundraising)

> > so that I can concentrate more wholly on finishing the RSS/SGA

> > Guidebook. My substitute, drum roll, will be our awesome

RSS/SGA

> > scholarship coordinator -- Dayna Carney. She has graciously

> agreed

> > to fill in for me, working with Katy Frissora, while I finish

> > writing the Guidebook. Dayna will officially begin Sept 1st and

> > we'll send our more info then. Be nice to her, OK?

> >

> > Stanhope has agreed to be the primary medical editor

with

> > Madeleine Harbison. When talked of how important this

> > Guidebook will be to the medical community, it made me realize

> that

> > I couldn't keep at the slow pace I was at -- scrambling to find

2-

> 3

> > hours a week to write in between the kids, house, laundry, and

our

> > division stuff. As you all know, there are only so many hours

one

> > can volunteer in a week!

> >

> > The other great news is that Dr. Czernichow, who spoke at

our

> > convention and is one of the most reknowned researchers in the

> field

> > of SGA, (and extremely well respected) has enthusiastically

agreed

> > to author the chapter on " Being Born SGA: Consequences into

> > Adulthood " which he spoke at the convention. This is a BIG kudo

> for

> > our Guidebook. Physicians will pay more attention to the

> guidebook

> > when they see who the editors are, and contributing authors such

> as

> > Mitch Geffner, Stanhope, Harbison and Czernichow.

> >

> > I have also almost completed the first draft of the IRB

> > (complicated, but it is the " ethics request " that must be

approved

> > in the US before you can do a study.) This RSS/SGA survey will

> > hopefully be conducted in 2006, and Harbison/Stanhope/Toumba and

I

> > will complete it for publication by the end of 2006 or early

2007.

> >

> > So, if you are trying to figure out if you should do a " walk " of

> > your own ... This is why!!!! Our small group of parents are the

> > ONLY ones out there doing anything like this!!! No one is

going

> to

> > help our kids and future kids with RSS except us.

> >

> > I don't want to beg, but I will!!! The walkathon is so easy.

> MAGIC

> > gives you a whole kit with everything you need -- and you pick

> your

> > own day, time, and how far you want to walk. You get pledges

for

> > each mile. The best thing is if you have kids that are old

enough

> > to walk -- it is a great family experience, and your child can

> write

> > a pledge appeal letter or draw a picture -- every dollar counts.

> >

> > Think of it this way. If 50 families each raised $500, we would

> > have $25,000. It adds up!!! Please help! Call tollfree 1-800-

> > 3MAGIC3 and ask for your own walkathon participation kit now!

> Make

> > a birthday party out of it. Get your child's Girl Scout or Cub

> > Scout troop to walk together. Or do it simply, like our family

> did

> > last year. Too busy to organize anything -- wrote a

> letter

> > and we mailed and emailed it to family and friends, and she went

> > door to door to neighbors. Then one Sunday morning, it was

sunny

> > and we said " let's do it today. " And off we went -- she walked

11

> > miles.

> >

> >

[Guest guest]

- wow - thank you. You are absolutely a gem - what great

information on how to organize the binder. I must have missed that

at the convention - and here, I thought it was all my idea..LOL

LOL...thank you so much - and I really like the idea of the two

prong folder - I've seen those - much better.

Thank you so much. And my husband thinks he's busy at work! He has

no idea does he. <GRIN>.

Take Care - H

> > > Hello everyone -

> > >

> > > Thanks to so many of you who are already planning your Walk

for

> > > MAGIC walkathons. Exciting!!!! Katy and I will be mailing

> > everyone

> > > a letter (if you are a member of MAGIC or are in our

database) --

>

> > > but wanted to give you the good news here.

> > >

> > > I am going to be taking a four-month " leave of absence " from

my

> > role

> > > as the co-division consultant (business development &

> fundraising)

> > > so that I can concentrate more wholly on finishing the RSS/SGA

> > > Guidebook. My substitute, drum roll, will be our awesome

> RSS/SGA

> > > scholarship coordinator -- Dayna Carney. She has graciously

> > agreed

> > > to fill in for me, working with Katy Frissora, while I finish

> > > writing the Guidebook. Dayna will officially begin Sept 1st

and

> > > we'll send our more info then. Be nice to her, OK?

> > >

> > > Stanhope has agreed to be the primary medical editor

> with

> > > Madeleine Harbison. When talked of how important this

> > > Guidebook will be to the medical community, it made me realize

> > that

> > > I couldn't keep at the slow pace I was at -- scrambling to

find

> 2-

> > 3

> > > hours a week to write in between the kids, house, laundry, and

> our

> > > division stuff. As you all know, there are only so many hours

> one

> > > can volunteer in a week!

> > >

> > > The other great news is that Dr. Czernichow, who spoke at

> our

> > > convention and is one of the most reknowned researchers in the

> > field

> > > of SGA, (and extremely well respected) has enthusiastically

> agreed

> > > to author the chapter on " Being Born SGA: Consequences into

> > > Adulthood " which he spoke at the convention. This is a BIG

kudo

> > for

> > > our Guidebook. Physicians will pay more attention to the

> > guidebook

> > > when they see who the editors are, and contributing authors

such

> > as

> > > Mitch Geffner, Stanhope, Harbison and Czernichow.

> > >

> > > I have also almost completed the first draft of the IRB

> > > (complicated, but it is the " ethics request " that must be

> approved

> > > in the US before you can do a study.) This RSS/SGA survey

will

> > > hopefully be conducted in 2006, and Harbison/Stanhope/Toumba

and

> I

> > > will complete it for publication by the end of 2006 or early

> 2007.

> > >

> > > So, if you are trying to figure out if you should do a " walk "

of

> > > your own ... This is why!!!! Our small group of parents are

the

> > > ONLY ones out there doing anything like this!!! No one is

> going

> > to

> > > help our kids and future kids with RSS except us.

> > >

> > > I don't want to beg, but I will!!! The walkathon is so easy.

> > MAGIC

> > > gives you a whole kit with everything you need -- and you pick

> > your

> > > own day, time, and how far you want to walk. You get pledges

> for

> > > each mile. The best thing is if you have kids that are old

> enough

> > > to walk -- it is a great family experience, and your child can

> > write

> > > a pledge appeal letter or draw a picture -- every dollar

counts.

> > >

> > > Think of it this way. If 50 families each raised $500, we

would

> > > have $25,000. It adds up!!! Please help! Call tollfree 1-

800-

> > > 3MAGIC3 and ask for your own walkathon participation kit now!

> > Make

> > > a birthday party out of it. Get your child's Girl Scout or

Cub

> > > Scout troop to walk together. Or do it simply, like our

family

> > did

> > > last year. Too busy to organize anything -- wrote a

> > letter

> > > and we mailed and emailed it to family and friends, and she

went

> > > door to door to neighbors. Then one Sunday morning, it was

> sunny

> > > and we said " let's do it today. " And off we went -- she

walked

> 11

> > > miles.

> > >

> > >