Re: question - physician education about RSS/SGA

[Guest guest]

- To answer some of your very good questions, yes, MAGIC does

a lot of educating physicians about growth disorders in general.

They attend many of the major endocrin and pediatric annual

conferences.

Our RSS division has not raised the money to be able to do any

physician education before this time. Being utterly honest here.

Those of you who have been MAGIC members for the last year know that

this is Katy and my HOT button!!!!

MAGIC has plenty of RSS and SGA brochures that we encourage families

to distribute to any physician. MAGIC also has their color MAGIC

magazine that they are willing to mail to any physician (covers all

disorders).

However, not to get to the specifics. IUGR is not always easy to

pick up in-utero. And when it is picked up, there are SOOO many

reasons that a child could be IUGR, and RSS is one of the very rare

ones -- so educating physicians on trying to pre-screen for RSS in-

utero is probably not ideal, at least for our small division.

And educating pediatricians about diagnosing RSS is probably not

ideal, either. THey simply see far too many children and there are

way too many disorders. I think where we have decided to try and

focus is as follows:

a) educate pediatricians to refer children who are not on the growth

charts to refer them to an endocrinologist!!!! (instead of trying

to specifically train them on RSS). This is also because due to the

massive amount of pediatricians in the country -- we couldn't raise

enough money to focus that large at this time

however, DO educate pediatricians who currently have an RSS or

SGA patient about them (and this is what the Guidebook will be for).

c) Then, onwards - educate the geneticists and the pediatric

endocrinologists on RSS and SGA. Most children who are diagnosed

IUGR in-utero usually get referred to one of these two specialists;

and if not in-utero but postterm, SGA and slow growth after, end up

seeing these 2 also.

So. What can you all do to help?

1) Make sure you are a member of MAGIC. There is financial aid if

you can not afford the $30 per year. Remind a questioning spouse

that if they can get Sports Illustrated for $100 a year, or 3 new

CDs in a year, you can join MAGIC. HA! When Katy and I apply for

grants, they often want to know how many RSS/SGA families we have in

our division. It is hard to say " well, 350 but we have another 250

on the listserve.... " Strength comes in numbers!!!

2) Make sure you call MAGIC and ask for extra copies of the RSS and

SGA pamphlets. Deliver them to all of your children's physicians.

Ask MAGIC for a MAGIC magazine for key physicians as well.

3) Once we get the video/DVDs of the convention done, encourage your

physician to order a set. (they will be free for physicians thanks

to a family's donation)

4) and when we get the guidebook done, wahoo!!!! More to come....

Hope this helps explain a bit. VERY good questions -- physician

education has to be a central component going forward for our

division.

> Hi all,

>

> I am newer to the board, went to the convention and have a

question.

> My daughter was diagnosed SGA by Dr. Harbison. It appears to me

> that the one big preindicator for both RSS and SGA is IUGR (or am

I

> wrong here). Wouldn't one think then that there would be some

> coordination between obgyn/ultrasound and the pediatrician,

> especially if they are in the same practice or procedure that if

the

> child is IUGR then they be screened for RSS or watched for SGA??

I

> know our pediatricians for our kids cannot know everything but has

> MAGIC to anyone's knowledge made overtures to pediatrics, or do

each

> of you individually try to educate?

>

> I would love to get MAGIC's flyers on RSS and SGA and distribute

> them. Wouldn't prescreening if a baby is IUGR save a lot of time

to

> diagnosis? I don't think IUGR is that common so it is not like a

ton

> of people would have to have their kids screened.

>

> I have to note here that due to many issues during my pregnancy I

was

> having a lot of ultrasounds and the Level 2 dr. told me when I was

20

> weeks pregnant that my daughter would likely be " a little person "

> (meaning dwarf...).

>

> My pediatrician did do a kidney ultrasound b/c of IUGR with my

> daughter but then just said she was growing but never told me she

was

> that far under the chart! Two other doctors from the practice saw

my

> daughter in the hospital and they all felt she was symmetrical so

the

> dwarf issue was out. What if every hospital had a copy of the

> RSS/SGA brochures to review for IUGR babies? Has this been done

> before?

>

> Just thoughts!

>

> , mom to MIchael 4.5 (non RSS), Emerence 17.5 mo 17 lb 7 oz

> 28.5 " (SGA)