Re: answer to re dr binders to Jenn Brock

[Guest guest]

Jenn,

You mention that you keep pictures of Lindsey in your binder and the pictures

where she had more the RSS look. I understand that as they get older their

" look " lessens. was seen by a geneticist when she was 3 3/4 who

diagnosed RSS. When she was 5 years 1 month she saw Dr. H who asked " who said

this child is RSS? " However, she did note that had a few of the

characteristics. Jodi Z and Jodie Cals have seen some pictures of when

she was like 2 or 3 and around that age where she has more of the look. Is this

something I should bring up to Dr. H and if so HOW? I never thought to keep

pictures in my binder. I don't doubt Dr. H and her knowledge by any means but

we are now left with a diagnosis from her as growth failure but not knowing why.

B

5 1/2 and Kelli 3

Brock wrote:

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]

Absolutely bring them with you. Even Dr. H admits she makes

mistakes. When she first saw 's photos that I sent (of

course, I sent the ones that made her look the cutest) she decided

then without seeing her she wasn't RSS. Then in the waiting room,

she looked at us from way down the hallway, and said loudly " who

says that child is RSS? " My husband and I were floored!!! Then we

got in the exam room, and she pulls back " the hair " (anyone with a

stereotypical RSS girl knows what I am talking about) and saw the

facial/skull features better, the asymmetry, etc. and said " ohhh.... "

PLUS, we have also had some kids she has said ARE RSS when they are

2 or so, and as they get better and more calories on them, realize

that they are probably NOT RSS, they are SGA -- but their faces were

so drawn and thin and triangular shaped that they looked RSS when

they were young.

It's all so much a crapshoot...

> > > 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.

> > >

> > >

>

>

>

>

>