Re: Magic Foundation Convention 2006

[Guest guest]

Go to the Magic Foundation's website: www.magicfoundation.org. You will

be able to read about the convention details as soon as they are posted. Is it

worth it to go all the way from Greece? I don't think you wil find any other

place where you will learn so much, see so many others with kids like yours,

feel so comfortable and so grateful. Even for people going for the first time,

they feel as if they are part of a very large and loving family. Bonds are

made

there that will last forever. And the kids can run around and be themselves, g-

tubes, walkers, feeding pumps and all. The information that comes out at the

sessions is so valuable - and you can meet the " great " and famous Dr.

Harbison and, hopefully, Dr. Stanhope. (He is from London, England.)

So, do I think it is worth it? You bet!

Jodi Z

[Guest guest]

Hi and WELCOME!

I am mom to Emerence who is 34 months old, 25 lbs (YAY!) and 32 " . She

is a very energetic child and is diagnosed Small for Gestational AGe

which is very similar to Silver Syndrome. The convention is

wonderful. Your written English seems good so you should be okay. It

could be very expensive though if you come but cannot understand what

is going on. I would recommend coming if you can. You will meet so

many of us and also attend lectures by specialists on RSS and SGA.

There also are DVDS available for sale now through MAGIC from the

past 2 years taht I really recommend you buy for yourself and share

with your son/daughter (?) endocrinologist. It covers a lot about

common concerns and treatment.

, mom to ,5, and Emerence 34 mo.

>

> Hallo there!

>

> I was wondering-because i've just registered in RSS Support list-if

i

> can find some information about the 2006 Magic Foundation Convention

> taking place in Chicago and if it really worth it coming up all the

way

> from Europe - Greece?

>

[Guest guest]

Dear ,

I would like to ask you if you know what the differences are between

Small for Gestational Age and the - Silver Syndrome. Our

last endocrinologist always talked about SGA and he never mentioned

RSS, I want to know if there are huge differences between

both 'disorders'.

Thanks for the information about the Convention. I am waiting to see

what Dr. H answers about her fees and the cost of medical tests of

Nicolas going to NY and then we would decide what to do.

Best wishes,

- Colombia

> >

> > Hallo there!

> >

> > I was wondering-because i've just registered in RSS Support list-

if

> i

> > can find some information about the 2006 Magic Foundation

Convention

> > taking place in Chicago and if it really worth it coming up all

the

> way

> > from Europe - Greece?

> >

>

[Guest guest]

I hope you don't mind if I interject. I also had the same question. When I

asked the Dr.s at Brocktons appt. yesterday, they said that RSS is a

manifestation of SGA. The SGA is caused by the RSS. Does that make sense? I

can't explain it the way that they did. I was wondering if Brockton possibly

had SGA and not RSS, but that is basically the way they described it to me.

I would love some information on this topic as well! Thanks for bringing it

up!

malalawify wrote:

Dear ,

I would like to ask you if you know what the differences are between

Small for Gestational Age and the - Silver Syndrome. Our

last endocrinologist always talked about SGA and he never mentioned

RSS, I want to know if there are huge differences between

both 'disorders'.

Thanks for the information about the Convention. I am waiting to see

what Dr. H answers about her fees and the cost of medical tests of

Nicolas going to NY and then we would decide what to do.

Best wishes,

- Colombia

> >

> > Hallo there!

> >

> > I was wondering-because i've just registered in RSS Support list-

if

> i

> > can find some information about the 2006 Magic Foundation

Convention

> > taking place in Chicago and if it really worth it coming up all

the

> way

> > from Europe - Greece?

> >

>

[Guest guest]

, I would recommend that you go to the www.magicfoundation.org

website and review the characteristics listed there for both

disorders.

In our upcoming Guidebook, we will actually have a listing. But in

a nutshell, RSS has a compilation of cranio-facial characteristics

that are typically not found (as a grouping) in SGA kids. Meaning,

there are 5-7 facial and skull features that are found in almost all

RSS kids, whereas a child with SGA may have 1, sometimes 2, even 3

of the features. In addition, most children with RSS have a head

circumference that is far closer (or on) the normal curve than their

weight and length at birth. THe SGA child's head circumference is

more often similar in proportion to their weight and length growth

curve.

Hope this helps.

> > >

> > > Hallo there!

> > >

> > > I was wondering-because i've just registered in RSS Support

list-

> if

> > i

> > > can find some information about the 2006 Magic Foundation

> Convention

> > > taking place in Chicago and if it really worth it coming up

all

> the

> > way

> > > from Europe - Greece?

> > >

> >

>