Re: Introduction from new member (mom)

[Guest guest]

Welcome aboard . I know exactly how you feel, however, my

daughter who is 4 1/2 was only diagnosed in October of 2003.

Prior to that her pediattrician diagnosed her with failure to thrive

at 9 months old and we went the route of a pediatric-gastro, a

nutrionist, blood work and a sweat test - all which were fine and

that's were the doctor left it off. We had no idea. It was 's

cardiologist (which at 3 1/2 was the first time anyone heard a murmur)

who had seen by a geneticist at Columbia Presbyterian in NY

who diagnosed RSS and this past February we saw an endo who agrees

with the geneticist's diagnosis of RSS. The endo stated that without

even having her blood work done he believes she is a candidate for

growth hormone and like you my husband and I were thinking to

ourselves prior to our visit that if we hear she will be around 4'10 "

we will leave it at that but when he said she is RSS and SGA and that

she may reach 4'10 " /4'11 " WITH growth hormone we were taken back.

Being that had open heart surgery in November to close a large

whole in her heart and this was only February we decided to let

keep recovering prior to doing anything. The endo Dr. Silverman who

will be at the convention this week suggested we see Dr. Harbison who

will also be at the convention because she is an " expert " with RSS.

She has over 130 patients in her practice. So here we are, we

recently joined this group and in the two weeks I have been online I

have learned sooooo much. We were told to call Dr. Harbison next week

to set up an appt for and I still have yet to get her blood

work done.

In fact, a woman was just in our office here at work and I would have

to say her height was about 4'8 " and I said to my co-workers that she

looked great but I'm sure the later teenage years throught the time

you fall in love and get married must be the hardest. I just hope

that I know the right things to do and say to to help her.

As far as seeing the pictures of the other children for me it was a

great way to see the height difference from rss kids to non rss kids

better. This group is really a great thing and in fact I have found

quite a few people that live within an hour's drive of me and already

I feel like I have found an extended family. My husband who I felt

was in a denial state actually was just worried and really didn't want

to hear more about anything of 's health but when I showed him

this site and the pictures our talks about and RSS have become

much better. In the past he would quickly try to end the conversation

so he would not have to think about it, now he is excited to know

there are people around us to help with questions and such.

Good luck with your daughter and post any questions and concerns. You

will get a lot of responses! You can always e-mail me privately if

you need to just talk. By the way, where do you live?

( 4 1/2, rSS 29lbs, 37 inches(just barely!) and Kelli 2, nonrss

> Hi I am , mother the Skylee, my RSS child. She just turned

> three. Almost 22 pounds and 33 inches tall. We suspected RSS from

> the time she was 12 months when I started taking her to the Mayo

> Clinic in Rochester, MN seeing Dr. Lteif. Finally two years later

> when we were referred to a geneticist we got the diagnosis of RSS.

>

> We knew there was a problem when I was 32 weeks pregnant and an

> ultrasound indicated she was very small. At 38 weeks labor was

> induced and Skye finally came out via cesarian weighing 4 lbs 11oz.

> We were surprised because ultrasounds indicated she would be 6 1/2

> pounds. (the asymmetry and the large head probably threw off the

> weight estimate). She was very healthy and strong as any baby.

>

> Now my spunky little girl will be starting preschool (that I work at)

> next month. I have so many concerns, but since I will be there with

> her I think she will get a lot out of it. The simplest things are

> making me worry like will she eat anything there, how will she get up

> to the toilet or to wash her hands, ect.

>

> TEETH are becoming a problem. The crowding and she already has

> cavities. Anyone have any good links I could print off for her

> dentist?

>

> Just looking around the internet I have seen pictures of other RSS

> kids that have a striking resemblance to my daughter. The big eyes,

> small chin, big ears. It has made me very emotional. I am so happy

> my child will be able to find other people just like her to

> communicate with as she grows. Sure it is 'so darn cute' she is so

> petite and tiny now, but she has so much ahead of her to deal with.

>

> Oh and the growth hormone. My husband and I had ruled that out, now

> reading your messages here I see it has been helpful for some of your

> children. I need to find more information on that.

>

> Thank you for letting me into your elite cliche. I am eager to get

> to know and learn from all of you.

>

>

[Guest guest]

Hi ,

Welcome to the group. I'm a 21 year old with RSS. I just wanted to

introduce myself and try to allay a few of your fears. I, at 21, am a

fully functioning, happy, well adjusted adult. I never had growth

hormone (it wasn't as widely available then as it is now), and I'm

4'2 " , but aside from my height, I'm a very typical colleges student.

I will be a senior at the University of Colorado in the fall, where I

am majoring in English Literature. I plan on going to law school once

I am finished with my undergraduate work this May. I truly feel that

RSS has not held me back or kept me from achieving the things I've

wanted to. In high school, I was an honor student as well as an

athlete (I ran cross country and was on the rodeo team) and I was

never lacking in friends. I'm still quite athletic, although my sport

of choice is now fencing, which I started when I got to college.

There are quite a few other adults with RSS on this list who are also

happy, well adjusted and successful. All have a career, many are

married and a few have children. RSS has not stopped or hindered any

of us. In fact, if you were to ask me to name the worst things that

have ever happened to me in my life, RSS wouldn't even make the list.

As far as your concerns about your daughter being able to reach

things, etc. in pre-school...she'll learn to adapt. My parents always

had stools around and made sure I could reach things like light

switches, etc., but if I couldn't reach something I'd devise a way

climb up to it. Kids are very resilient and innovative - if your

daughter's world doesn't fit her, she'll come up with ways to compensate.

Please feel free to ask me any other questions you might have.

Hopefully, some of the other adults with introduce themselves when

they get back from the MAGIC Convention on the 24th.

~Hillary

21, RSS

[Guest guest]

Hi ,

Welcome! I'm so glad you found this board. There is allot of good

information on it. Many of our members are at the Magic Foundation

yearly convention. We couldn't make it this year because my RSS son

has pulmonary issues and can't fly yet (He is prone to lung

congestion and we can't risk him picking up any germs.) but, we plan

on going next year when he is older. I encourage you to check out

the Magic Foundation web site. It is a great resource for

information and has a division for RSS/SGA kids.

Saundra Mom to Braeden (RSS) and Delaney 21 month twins

> Hi I am , mother the Skylee, my RSS child. She just turned

> three. Almost 22 pounds and 33 inches tall. We suspected RSS

from

> the time she was 12 months when I started taking her to the Mayo

> Clinic in Rochester, MN seeing Dr. Lteif. Finally two years later

> when we were referred to a geneticist we got the diagnosis of

RSS.

>

> We knew there was a problem when I was 32 weeks pregnant and an

> ultrasound indicated she was very small. At 38 weeks labor was

> induced and Skye finally came out via cesarian weighing 4 lbs

11oz.

> We were surprised because ultrasounds indicated she would be 6 1/2

> pounds. (the asymmetry and the large head probably threw off the

> weight estimate). She was very healthy and strong as any baby.

>

> Now my spunky little girl will be starting preschool (that I work

at)

> next month. I have so many concerns, but since I will be there

with

> her I think she will get a lot out of it. The simplest things are

> making me worry like will she eat anything there, how will she get

up

> to the toilet or to wash her hands, ect.

>

> TEETH are becoming a problem. The crowding and she already has

> cavities. Anyone have any good links I could print off for her

> dentist?

>

> Just looking around the internet I have seen pictures of other RSS

> kids that have a striking resemblance to my daughter. The big

eyes,

> small chin, big ears. It has made me very emotional. I am so

happy

> my child will be able to find other people just like her to

> communicate with as she grows. Sure it is 'so darn cute' she is

so

> petite and tiny now, but she has so much ahead of her to deal

with.

>

> Oh and the growth hormone. My husband and I had ruled that out,

now

> reading your messages here I see it has been helpful for some of

your

> children. I need to find more information on that.

>

> Thank you for letting me into your elite cliche. I am eager to

get

> to know and learn from all of you.

>

>

[Guest guest]

Hi - your description of Skylee sounds a lot like that of my

Ann. RE: DENTIST. We lived in Los ANgeles and were referred to the

cranial-facial clinic at UCLA. They were marvelous! A lot of

dental planning, some extractions (because of evercrowded teeth) and

braces (just like a lot of kids) later. Our dentist had referred

us to a pediatric dentist who said he thought he knew what he would

do but he preferred to refer us to UCLA because he did not know

anything about RSS. (Now you have nationwide information.) Dentist

Dr. Mulick headed up the dental part of the team at that time.

He was truly wonderful. He may be retired. He also had a private

practice in the Thousand Oaks area of southern cal. (That town is

divided between LA COunty and Ventura County). Her teeth turned out

to look very nice. By the way, she had a geminated (twinned) baby

tooth. I had to watch the fruit juices (sugar contects) because

she, too, was cavity prone. I suggest your dentist could contact the

cranial-facial (or whatever name it has now) clinic at UCLA for any

information.

Ann's asymmetry lessened as she grew older.

Handwashing/toilet: Try a stable (not tippable) step-stool for

the bathroom at school (and maybe one for near the drinking fountain

if needed). Just make certain it is lightweight enough for her to

move herself. akice Quinn

-- In RSS-Support , " kdogkels " <ronlisab@h...> wrote:

> Hi I am , mother the Skylee, my RSS child. She just turned

> three. Almost 22 pounds and 33 inches tall. We suspected RSS

from

> the time she was 12 months when I started taking her to the Mayo

> Clinic in Rochester, MN seeing Dr. Lteif. Finally two years later

> when we were referred to a geneticist we got the diagnosis of

RSS.

>

> We knew there was a problem when I was 32 weeks pregnant and an

> ultrasound indicated she was very small. At 38 weeks labor was

> induced and Skye finally came out via cesarian weighing 4 lbs

11oz.

> We were surprised because ultrasounds indicated she would be 6 1/2

> pounds. (the asymmetry and the large head probably threw off the

> weight estimate). She was very healthy and strong as any baby.

>

> Now my spunky little girl will be starting preschool (that I work

at)

> next month. I have so many concerns, but since I will be there

with

> her I think she will get a lot out of it. The simplest things are

> making me worry like will she eat anything there, how will she get

up

> to the toilet or to wash her hands, ect.

>

> TEETH are becoming a problem. The crowding and she already has

> cavities. Anyone have any good links I could print off for her

> dentist?

>

> Just looking around the internet I have seen pictures of other RSS

> kids that have a striking resemblance to my daughter. The big

eyes,

> small chin, big ears. It has made me very emotional. I am so

happy

> my child will be able to find other people just like her to

> communicate with as she grows. Sure it is 'so darn cute' she is

so

> petite and tiny now, but she has so much ahead of her to deal

with.

>

> Oh and the growth hormone. My husband and I had ruled that out,

now

> reading your messages here I see it has been helpful for some of

your

> children. I need to find more information on that.

>

> Thank you for letting me into your elite cliche. I am eager to

get

> to know and learn from all of you.

>

>