TO nne

[Guest guest]

Hi

Mia is so cute also, and somewhat resembles Naomi to me. Naomi was

also born exactly at 36 weeks (I mistyped that part earlier). So

their birth weight, height, and gestational age all are exactly the

same!! She was born Nov. 2002. She is now 27.25 inches and 19 lbs,

after 6 months of GH. She was first thought to have some sort of

skeletal dysplasia by local geneticists, so we went to see Dr

in Delaware who is a top dwarfism specialist, she said she does not

have a skeletal dysplasia her limbs are proportionate but her hand

and feet are so small, her total arm length is small due to the small

hands and so it appears she has short limbs. But he could not give a

definite diagnosis either. But not RSS for sure (RSS was only one of

the dozen syndromes a local geneticists said she had some features

of, such as big head, boss forehead, low birthweight etc.) She also

has some other odd issues such as low blood calcium (she takes

supplements for that),

Other than that, she has no other health issues now.

May be Naomi and Mia have the same yet unidentified condition who

knows!!

Nice to know you and Mia

Sabina

- In RSS-Support , " odmomx4 " <odmomx4@y...> wrote:

>

> 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]

Sabina, Mia was born on Nov. 6, 2002 (her due date was Dec. 6).

They were exactly the same!! Her hands and feet are sooo small

too. Even small for her small size. Mia was seen by Dr. H and told

she had severe osteopenia. What is a low blood calcium? Mia's

calcium may not be binding or something like that. She still has

low muscle tone and gets PT,OT and Feeding therapy but has not had

GH yet. Mia also has no other health issues now (she has also never

had a feeding tube.) They just sound so similar! Are you going to

the convention in July? I think we are. It would be neat for them

to meet! Thanks for writing back!

nne

> > > > >

> > > > > 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]

nne

Naomi was born Nov 5 and was due Dec 2! They are almost twins! My

duaghter first fell ill (stopped breathing) at 2 months with RSV, and

they found she had very low blood caclium that contributed, First the

endo said she had hypoparathyroidism (parathyroid hormone controls

bloood calcium, altough 99% of Ca is in the bones, the 1% in blood is

critical and low calcium can cause tremor, seizures, and even

respitarory arrest). She needed the tube after her illness , when she

refused take the bottle once she came off ventilator and TPN

(intravenous food)and had the NG tube for a year. Her GI was

optimistic that she would eat on her own once she was strong enough

and held off on G-tube, and she was right (I almost insisted for a g-

tube). enough But her ca levels went up after she got better, then

she stayed totally healthy then last Nov after a few days of

vomitting her Ca crashed again. Now its fine. So whenever she is sick

or doesnt get enough to eat her parathyroid acts up. Her bones are

also thin and gracile but its not OI (osteogenesis imperfecta). She

gets PT, OT at home. Her muscle tone was also low but now it improved

after GH. Her soft spot was huge it is still open and quite big. Her

eyes are also farsighted but the opthalmologist says it improves with

age and she can see okay but just has to work hard on it? Did you

have Mias eyes checked? We had everything under the sun checked and

tested. All the doctors who has seen her says she is not like

anything they have seen before, and her doctors now fondly say she

has Naomi syndrome. We are in Texas so the trip to Chicago would be

quite expensive so I am nore sure about the convention. Where do you

live?

Sabina

> > > > > >

> > > > > > 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