Re: Beth Joe: Question

[Guest guest]

Hi ,

Thanks, we also think she is a cutie.

It must be the angle I was holding in her baby picture

that doesn't show her features well. She definitely has a big

head, lower set ears, a very triangular shaped chin, and was full

term SGA. When I compare her to other RSS infants' pictures on

the list serve there is a direct relationship, so I have no question

in my mind that it is RSS. With her new diet over the past year her

face has broadened nicely and she has started to loose her RSS

triangular features, which has totally surprised us. It appears as

her weight to height ratio is the key to as to why the features have

diminished.

Beth

>

> Beth Joe -

>

> Is that your 's pictures that are posted

> under " " ? What a cutie! She sure looks great now. Can

I

> ask a dumb question? Who diagnosed her as RSS? I am sure she was

> SGA and failure to thrive, but I have to tell you that I don't see

> any of the stereotypical features of RSS on that little girl,

either

> as an infant or an older child. I hate to be the one even saying

> this -- and remember that sometimes photos can hide things.

> 's baby photos showed the big head, the forehead and the

ears

> but her triangular shaped part was not as visible because her

weight

> for height was good. So one truly can't say for sure from

photos.

> But I would be blown over by feather if she was really RSS. Where

> do you live? Maybe we could recommend someone with a second

> opinion. She was full-term SGA right? I am so sorry that I can't

> remember right now and want to go to bed without going through the

> archives. You can write me privately if you want -- I didn't know

> your address. Mine is magicrss@ mindspring.com. Salem

[Guest guest]

hey beth!!

you kids a very cute!! thanks for sharing the pics!!

jodie c

[Guest guest]

Hi Beth

Your kids are all so cute.

My dauther who is 2 now also has a big head, big forehead, and low-

set years, any many in this group thought she looked RSS. But after

seeing all the local geneticists we saw a reknowned geneticist who

specialized in dwarfism, who said she is not RSS. We did not get any

specific diagnosis, she is just unique. It appears there are dozens

of syndrome or conditions that causes bossed forehead, low set years

etc. She was just smaller than most RSS, but she her weight to height

is better than RSS kids. She was born 3-15 and 16 inches at 16

inches. I am no expert on RSS, but in researching all sorts of

syndromes for my daughter have come to learn some RSS features like

boss forehead, large head, and low set ears are very common. But my

daugther does not have the specific " look " that sets the RSS kids

apart.

Sabina mother of Naomi (can check her photo in the photo section)

-- In RSS-Support , " beth_joe_williams "

<beth_joe_williams@y...> wrote:

>

> Hi ,

>

> Thanks, we also think she is a cutie.

>

> It must be the angle I was holding in her baby picture

> that doesn't show her features well. She definitely has a big

> head, lower set ears, a very triangular shaped chin, and was full

> term SGA. When I compare her to other RSS infants' pictures on

> the list serve there is a direct relationship, so I have no

question

> in my mind that it is RSS. With her new diet over the past year

her

> face has broadened nicely and she has started to loose her RSS

> triangular features, which has totally surprised us. It appears as

> her weight to height ratio is the key to as to why the features

have

> diminished.

>

> Beth

>

>

> >

> > Beth Joe -

> >

> > Is that your 's pictures that are posted

> > under " " ? What a cutie! She sure looks great now. Can

> I

> > ask a dumb question? Who diagnosed her as RSS? I am sure she

was

> > SGA and failure to thrive, but I have to tell you that I don't

see

> > any of the stereotypical features of RSS on that little girl,

> either

> > as an infant or an older child. I hate to be the one even saying

> > this -- and remember that sometimes photos can hide things.

> > 's baby photos showed the big head, the forehead and the

> ears

> > but her triangular shaped part was not as visible because her

> weight

> > for height was good. So one truly can't say for sure from

> photos.

> > But I would be blown over by feather if she was really RSS.

Where

> > do you live? Maybe we could recommend someone with a second

> > opinion. She was full-term SGA right? I am so sorry that I

can't

> > remember right now and want to go to bed without going through

the

> > archives. You can write me privately if you want -- I didn't

know

> > your address. Mine is magicrss@ mindspring.com. Salem

[Guest guest]

Sabina, I read your post to Beth and my daughter Mia sounds so much

like your daughter. She was 3lbs 15 oz and 16 inches born at 36

weeks (how early was Naomi?). She has many features of RSS but Dr.

H and a few others said she is not RSS just SGA. How big is Naomi

now? Mia is 2 years and 3 mos and 21 pounds. Just thought I would

tell you our kids sound so similar. naomi is soooo cute!! Mia's

picture is right next to hers! Have a great day!

nne in Tampa (Mom to Allie 9, Jack 8, Casey 4, and Mia 2 SGA)

> > >

> > > Beth Joe -

> > >

> > > Is that your 's pictures that are posted

> > > under " " ? What a cutie! She sure looks great now.

Can

> > I

> > > ask a dumb question? Who diagnosed her as RSS? I am sure she

> was

> > > SGA and failure to thrive, but I have to tell you that I don't

> see

> > > any of the stereotypical features of RSS on that little girl,

> > either

> > > as an infant or an older child. I hate to be the one even

saying

> > > this -- and remember that sometimes photos can hide things.

> > > 's baby photos showed the big head, the forehead and

the

> > ears

> > > but her triangular shaped part was not as visible because her

> > weight

> > > for height was good. So one truly can't say for sure from

> > photos.

> > > But I would be blown over by feather if she was really RSS.

> Where

> > > do you live? Maybe we could recommend someone with a second

> > > opinion. She was full-term SGA right? I am so sorry that I

> can't

> > > remember right now and want to go to bed without going through

> the

> > > archives. You can write me privately if you want -- I didn't

> know

> > > your address. Mine is magicrss@ mindspring.com.

Salem

[Guest guest]

Hi Sabina,

Thanks for the imput, we feel comfortable with the accuracy of

's diagnosis. The picture my husband chose was not the

best for showing her features that well.

Beth

> > >

> > > Beth Joe -

> > >

> > > Is that your 's pictures that are posted

> > > under " " ? What a cutie! She sure looks great now.

Can

> > I

> > > ask a dumb question? Who diagnosed her as RSS? I am sure she

> was

> > > SGA and failure to thrive, but I have to tell you that I don't

> see

> > > any of the stereotypical features of RSS on that little girl,

> > either

> > > as an infant or an older child. I hate to be the one even

saying

> > > this -- and remember that sometimes photos can hide things.

> > > 's baby photos showed the big head, the forehead and

the

> > ears

> > > but her triangular shaped part was not as visible because her

> > weight

> > > for height was good. So one truly can't say for sure from

> > photos.

> > > But I would be blown over by feather if she was really RSS.

> Where

> > > do you live? Maybe we could recommend someone with a second

> > > opinion. She was full-term SGA right? I am so sorry that I

> can't

> > > remember right now and want to go to bed without going through

> the

> > > archives. You can write me privately if you want -- I didn't

> know

> > > your address. Mine is magicrss@ mindspring.com.

Salem