Re: New to RSS????-Debby

[Guest guest]

Debby,

You said exactly what I was going to say. Hailey had a

genetics doctor tell us that she thought Hailey had

RSS. We went to the convention this year and Dr. H

said that she was not RSS, she is SGA. We are having a

lot of the same problems with Hailey as the RSS kids,

she just does not have the physical features.

--- Deb wrote:

>

> Since the tests for RSS are not conclusive (eg. the

> one genetic test

> UPD7--only 10% of our kids test positive for that

> one) it's really a visual

> diagnosis after everything else has been eliminated.

> However Dr. H. has so

> many RSS patients that she is able to " tell " by

> looking. Many of our parents

> on this list have been told " SGA " (small for

> gestational age) because the

> RSS is just not there to Dr. H. but there is

> " something " . Either way, the

> treatment for SGA is the same as RSS (hence why

> Magic changed our division

> name to RSS/SGA).

> Whether you get the RSS diagnosis from her or the

> SGA, you will follow the

> same protocol and you will, of course, hang out here

> to learn as much as you

> can. But Dr. H. is one of those doctors that you

> just *know* once she has

> said something, it's most likely to be true. Her

> confidence is that high.

> She is rather abrupt with her patients (and their

> parents) though. So

> prepare yourself for that. She calls a spade a spade

> and doesn't pussy foot

> around with anyone's *self esteem* LOL

> I have never heard anyone coming away from Dr. H.

> having her say " we can't

> find anything wrong, so try this for a few months " .

> It seems to me, from the

> stories I have heard, she is more likely to say " yes

> it's RSS " or " no it's

> not RSS but I am pretty sure it's " XYZ " and this is

> exactly what we are

> going to do about it " .

> You don't feel like you have been brushed away and

> forgotten with her. I

> have had doctors tell me " there's nothing we can do,

> don't come back "

> many,many times.

>

> Anyway, have you booked a date to see her yet?

>

> Debby

>

>

> New to RSS????

> >

> >

> > > Hi, my 4 years old son has just been

> told that he falls

> > > within the " spectrum of RSS " (whatever that

> means?!). After suffering

> > > for 4 years with repeated dr visits and tests,

> were relieved at a name

> > > for the pain, yet left with yet more questions.

> We're in the process

> > > of getting insur approval and apt with Dr. H in

> New York (after reading

> > > all of your wonderful success stories on MAGIC

> Foundation)and hoping

> > > you more experienced moms can help lead the way

> a little for us!

> > > is 4 yrs 4 months, 27lbs and 37

> inches. He had a fundo and

> > > G-tube put in in March of 2004, with still no

> improvement. He has many

> > > of the characteristics of RSS yet not all of

> them, yet so many of your

> > > stories describe him to a T !

> > > In any case I'm kind of alone in my efforts,

> researching and taking the

> > > action to find help, yet unsure of my every move

> as well. I would just

> > > really love to find someone who can take his

> history and give us hope

> > > for his future, direction. THis spinning in

> circles is for the birds!

> > > Any help or advice would be very appreciated!

> > > -Siss@

> > > P.S. I'm in California...Doctors dont give much

> credence to RSS or

> > > hypoglysemia here!

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >