Question regarding RSS look

[Guest guest]

iel will go to see the geneticist tommorow. He was waiting for

the results to 's GH stim test. I anxious to find out what he

thinks. I myself am not absolutely sure he has RSS. I have been

following this listserve for a couple weeks now and have learned so

much. I have looked at the photos and read the posts. I am guilty of

not responding too often or becoming supper involved, not because I

don't want to but because we are still undiagnosed, and I am

relucatant to build relationships that we may not be able to keep.

One thing I can say for sure is that you all have a family type thing

going on and this listserve is a unique and warm caring place. It is

probably one of the best resources a parent in my situation could

have. Anyway that said back to why I was writting! The reason I am

not so convinced Nate has RSS is he does not have a very broad,

bossed, prominent forehead. And being that is one of the cardinal

features of RSS I am not completely convinced he has it. He did have

it more when he was little, when I look back at his pictures I see

it, now however I don't. he does have the turned in pinkies, he

definitely has the poor growth ( both height and weight), he

struggles to put on even a pound in fact it looks as if his growth

chart ressembles that of RSS kids. He does not have any obvious

assymetry. He has the feeding issues and a few other things that

point to RSS. My question is this do all RSS children without an

exception have a very obvious prominent forehead? A response to this

would be very helpful to me in easing the what if's. Well I will let

you all know what happens tommorow and what the Geneticist thinks.

Thank you all for the support. I wish you all and your little one's a

good week and weekend. Anita ( mom to iel 7 y.o.34lbs. 105.1cm

Undiagnosed)

[Guest guest]

I just wanted to tell you that RSS was explained to us by genetics as a host of

physical features. Your child does not have to have all characteristics in

order to have a RSS diagnosis. A prominent forehead is just one of the traits

linked to RSS. Raven did have the forehead, but it went away in time.I hope

this helps. Good luck, denise

atwine22 wrote: iel will go to see the

geneticist tommorow. He was waiting for

the results to 's GH stim test. I anxious to find out what he

thinks. I myself am not absolutely sure he has RSS. I have been

following this listserve for a couple weeks now and have learned so

much. I have looked at the photos and read the posts. I am guilty of

not responding too often or becoming supper involved, not because I

don't want to but because we are still undiagnosed, and I am

relucatant to build relationships that we may not be able to keep.

One thing I can say for sure is that you all have a family type thing

going on and this listserve is a unique and warm caring place. It is

probably one of the best resources a parent in my situation could

have. Anyway that said back to why I was writting! The reason I am

not so convinced Nate has RSS is he does not have a very broad,

bossed, prominent forehead. And being that is one of the cardinal

features of RSS I am not completely convinced he has it. He did have

it more when he was little, when I look back at his pictures I see

it, now however I don't. he does have the turned in pinkies, he

definitely has the poor growth ( both height and weight), he

struggles to put on even a pound in fact it looks as if his growth

chart ressembles that of RSS kids. He does not have any obvious

assymetry. He has the feeding issues and a few other things that

point to RSS. My question is this do all RSS children without an

exception have a very obvious prominent forehead? A response to this

would be very helpful to me in easing the what if's. Well I will let

you all know what happens tommorow and what the Geneticist thinks.

Thank you all for the support. I wish you all and your little one's a

good week and weekend. Anita ( mom to iel 7 y.o.34lbs. 105.1cm

Undiagnosed)

[Guest guest]

Anita:

I, too, question whether or not my son has RSS although he had a " clinical

diagnosis " . I don't think he has a particularly prominent forehead either.

It's no worse than his fathers! As for the turned in pinkie finger.........he

doesn't have them, but I DO! God knows I'm not RSS! I LOVE TO EAT and it

shows! LOL Brockton has NONE of the obvious features of RSS. He's perfect

in every way!

Sometimes I think we just want to put a name with issues our children have,

such as height and weight issues. I've decided that I'm just going to accept my

son as he is and not give him a label until he has SERIOUS issues. Life is just

too short to worry about things that may never come to pass! That's just my

theory.

My girlfriend's daughter was born 5 1/2 yrs. ago at 1 lb. 4 oz. and she didn't

even realize until two weeks ago when she requested a copy of her records from

the NICU that she also was diagnosed RSS/SGA!!! She's perfectly healthy.

Small but perfect otherwise. No.............she doesn't eat much, but her

mother never knew about the RSS diagnosis and she's DOING GREAT!

I do hope that you get positive results and wish you a happy and healthy

future for yourself and your children. Good luck!

Jeanie (mom to 19 and Brockton 17 1/2 mo.)

atwine22 wrote:

iel will go to see the geneticist tommorow. He was waiting for

the results to 's GH stim test. I anxious to find out what he

thinks. I myself am not absolutely sure he has RSS. I have been

following this listserve for a couple weeks now and have learned so

much. I have looked at the photos and read the posts. I am guilty of

not responding too often or becoming supper involved, not because I

don't want to but because we are still undiagnosed, and I am

relucatant to build relationships that we may not be able to keep.

One thing I can say for sure is that you all have a family type thing

going on and this listserve is a unique and warm caring place. It is

probably one of the best resources a parent in my situation could

have. Anyway that said back to why I was writting! The reason I am

not so convinced Nate has RSS is he does not have a very broad,

bossed, prominent forehead. And being that is one of the cardinal

features of RSS I am not completely convinced he has it. He did have

it more when he was little, when I look back at his pictures I see

it, now however I don't. he does have the turned in pinkies, he

definitely has the poor growth ( both height and weight), he

struggles to put on even a pound in fact it looks as if his growth

chart ressembles that of RSS kids. He does not have any obvious

assymetry. He has the feeding issues and a few other things that

point to RSS. My question is this do all RSS children without an

exception have a very obvious prominent forehead? A response to this

would be very helpful to me in easing the what if's. Well I will let

you all know what happens tommorow and what the Geneticist thinks.

Thank you all for the support. I wish you all and your little one's a

good week and weekend. Anita ( mom to iel 7 y.o.34lbs. 105.1cm

Undiagnosed)

[Guest guest]

> >

> > iel will go to see the geneticist tommorow. He was waiting

> for

> > the results to 's GH stim test. I anxious to find out what

> he

> > thinks. I myself am not absolutely sure he has RSS. I have been

> > following this listserve for a couple weeks now and have learned

> so

> > much. I have looked at the photos and read the posts. I am guilty

> of

> > not responding too often or becoming supper involved, not because

> I

> > don't want to but because we are still undiagnosed, and I am

> > relucatant to build relationships that we may not be able to

keep.

> > One thing I can say for sure is that you all have a family type

> thing

> > going on and this listserve is a unique and warm caring place. It

> is

> > probably one of the best resources a parent in my situation could

> > have. Anyway that said back to why I was writting! The reason I

am

> > not so convinced Nate has RSS is he does not have a very broad,

> > bossed, prominent forehead. And being that is one of the cardinal

> > features of RSS I am not completely convinced he has it. He did

> have

> > it more when he was little, when I look back at his pictures I

see

> > it, now however I don't. he does have the turned in pinkies, he

> > definitely has the poor growth ( both height and weight), he

> > struggles to put on even a pound in fact it looks as if his

growth

> > chart ressembles that of RSS kids. He does not have any obvious

> > assymetry. He has the feeding issues and a few other things that

> > point to RSS. My question is this do all RSS children without an

> > exception have a very obvious prominent forehead? A response to

> this

> > would be very helpful to me in easing the what if's. Well I will

> let

> > you all know what happens tommorow and what the Geneticist

thinks.

> > Thank you all for the support. I wish you all and your little

> one's a

> > good week and weekend. Anita ( mom to iel 7 y.o.34lbs.

> 105.1cm

> > Undiagnosed)

> >

>