New to this

August 23, 2004

Dear cat eyes, (cool screen name)

First of all, take a deep breath, then thank God for your little

miracle!

After you breath some more, look up www.magicfoundation.org online

and read all you can about RSS and remember that your child will not

have everthing listed, but some. Then breath some more, cry some for

the grief of not getting what you expected, but be thankful for what

a wonderful gift you did get!

After all is said and done, RSS is not so bad, and if it weren't for

my son having RSS, I would have missed out on a lot in this life,

including some GREAT friends.

Now, if you have any specific question, there are plenty of us on

this list that will gladly answer them.

A little about us, My name is Carmen, My son with RSS is Storm and he

is about to turn 9 years old. He was diagnosed at 10 months of age

(11.5 pounds) by a genecisit who told us there was nothing we could

do, he was just going to be small and skinny. WELL, he is now

touching the 5% line for height, on the growth chart and we are

excited. There is plenty that can be done. He is also on the 20% line

for weight. He never touched the lines before the last couple of

years since he started growth hormone treatments and since we got his

reflux and asthma under control.

He is growing and doing great. He has a purple belt in Karate, and

loves sports. He also shows longhorns at stock shows (Picture in the

Photo files if you want to see) He is an awesome kid and he is smart.

Don't give up on your little one. These kids seem to have the

greatest personalities around. I hope this will help you some and

please ask questions. Someone on this list will answer.

Blessings to you,

Carmen, mom to Paisley (11) and Storm (9)RSS, 48 inches and 53 pounds

August 23, 2004

first i would love to say wellcome to a great place.#2 look up the magic

foundation they have woundreful advice. i would love to help more could you tell

us a bit more weight height what complaction you are having

cara mom to jacob

cat_eyez_212003 wrote:

Im new to all this my son, which is about 8 months, was just

diognosed with RSS. Im a litle over whelmed with all of this. If any

one has any thoughts for me. Or how to react on this I would

apprciate this.

August 23, 2004

Hi and welcome!

My son was born 1-19-04 and we just received confirmation last month

that he has RSS. I have beeen a member of this list serve for a few

months and you have come to the right place. You need to check out

the MAGIC website..there is a lot of information to digest but it is

a great place to start. Sometimes in the beginning the posts about g-

tubes and growth hormones can be scary, but just remember that there

are different degrees of RSS.

Feel free to ask any questions and there are no " stupid " questions.

If you don't mind me asking..who diagnosed?

Take care and feel free to e-mail me privatley if you want to.

Mimi- mom to Isaac , RSS, hypothyroidism..at convention measured

10lbs 9 oz and 22 3/4 inches

> Im new to all this my son, which is about 8 months, was just

> diognosed with RSS. Im a litle over whelmed with all of this. If

any

> one has any thoughts for me. Or how to react on this I would

> apprciate this.

August 23, 2004

Hi there...........you didn't mention your name. What is your son's name?

Where do you live?

Depending on where you live we have many people from around the world on

this site that can give you some valuable support.

The first thing you should do is go and check out www.magicfoundation.org

Magic is a foundation for a variety of growth related disorders and you will

find a quick explanation of RSS there. First it will tell you that you did

absolutely nothing wrong in your pregnancy.

It also lists a lot of the main characteristics, secondary ones and rare

ones.

There is a fantastic doctor in the U.S. (in New York) who sees over 100 RSS

children. None of us have an endo. with that many RSS children. She spends a

huge amount of time in Chicago each year at the annual Magic convention

dispensing life saving advice for us all to take back to our doctors.

Please don't feel over whelmed. You have made an excellent choice by joining

here. We have new borns all the way to late age teenagers in our midst and

the parents are all at various stages of our adventures with our little

ones.

I live in Canada and my son is 11 1/2 years old. If you have any specific

questions, we are more than willing to help you out.

For now, you need to be thankful you found this place. Read and write

whenever you want. Second, please check out Magic. Third, take a deep breath

and know that, it might sound contrite to say, but there are a great deal

more awful and damaging things our children could be born with than RSS. You

will quickly discover, if you haven't already, that our kids are truly

special. They are loving, and just such joys to have around. Their

personalities truly sparkle. Love you son like crazy (it seems like just

yesterday my son was 8 months) they grow up too fast.

If you have feeding issues (is your son using a feeding tube? some of our

children do and some do not........my son never had one)........but that

will be your main focus right now.........getting him to eat and get the

calories into him. Later you may choose to begin growth hormone therapy

(which many of us do).

But for now, collect your thoughts, and take a deep breath, everything will

be OK. We here will make sure of it!!!

Debby

New to this

> Im new to all this my son, which is about 8 months, was just

> diognosed with RSS. Im a litle over whelmed with all of this. If any

> one has any thoughts for me. Or how to react on this I would

> apprciate this.

>

August 24, 2004

<<We have new borns all the way to late age teenagers in our midst>>

WOW is that what we are calling 38 year olds now?? (LOL) Late teenagers....

I like it.....

Mom to Liam (3 1/2 years old 34 3/4 " 27 lbs

SGA / possible RSS, Hypothyriod, Epilepsy.) Started GHT 5/18/04

and Jed (11 years old) Tourettes, CAPD,SVT.

SW Orlando FL

Check out my group:

http://health.groups.yahoo.com/group/ToddlerswEpilepsy/?yguid=174302728

August 24, 2004

First of all, you have come to the right place. You will be so

supported here, and get so much information. I know how you are

feeling. I was in your position almost one year ago myself. But, my

son was 17 months old weighing a mere 10 lbs. 10 oz. at the time, and

we weren't even sure that had RSS. I posted on here a few

times, and got more information about Dr. Harbison who is a RSS

specialist in New York City. I was so supported and encouraged

here. I had been trying to get in touch with Dr. H for some time,

but never could get through to her office. Anyway, I had a lot of

encouragement here, as later I found out, people here were very

concerned about my son and his weight and a couple other issues he

had. So they helped me and encouraged me to keep trying to get a

hold of Dr. H. And, thank God I did. was severely

malnourished and needed at least twice as many calories. He has had

a tube since birth, but was struggling so much with the spitting up,

which we can now say with documentation is reflux, and he is very

volume sensitive. He can't take in too much at one time. We have to

do a little at a time.

But, all of this was very scary at the time, but once I saw Dr. H and

found out he definitely has RSS, things got a little easier to take

and understand. Now I knew why he wasn't gaining weight even though

we were stuffing him full to the point of misery. I thought I was

doing something wrong. But, upon speaking with Dr. H, I knew I was

doing all I could. She was a life saver though in that she changed

him to a different type of tube and changed his feeding regimine, and

he gained all kinds of weight after that. As a matter of fact, she

says he is chubby for an RSS kid right now, so she has cut his feeds

way back and now we are on the road to seeing when we can start

growth hormones.

I know I have given you a lot of information, but I just wanetd to

share a little of what our story was like. The thing with , is

that we didn't have an RSS diagnosis for him until he was 17 months

old, so those first few months were terrifying. Right before I saw

Dr. H, I didn't even know how he was surviving. He was very skinny

and sickly. But, thanks to this group, they helped me through it,

and a lot of them can tell you the shock and surprise at the amazing

progress that made after the Dr. H appointment. I want you to

know, that RSS isn't that bad. Like someone else said, it could be

worse. And I look around when I am at therapy with , and see

how much worse it could be, I am so thankful.

The MAGIC Foundation is awesome, and so full of information. I hope

you have checked into their website to read about RSS. They put on

an annual convention once a year, every July, for all the growth

disorders they serve. But, RSS seems to always have the biggest turn

out. I went this year for the first time, and I met so many

wonderful parents and kids with RSS, even some RSS adults! It was so

great and so much fun, and you learn so much. The membership is $30

for a year, but so worth it. They have an article library on topics

related to RSS, it is amazing.

I am so sorry this has gotten so long, but I could understand exactly

where you are right now, because like I said, I was there about a

year ago. But, being on this listserve and getting information from

people here and support, my son has come a very long way from being

that skinny, sickly, medically fragile little baby, to a big, healthy

toddler! Amazing results in so little time. You will learn so

much. Just take your time and don't let my post here overwhelm you.

I just wanted to show you a real life situation in which amazing

things actually do happen as a result of this listserve and one

truley awesome RSS doctor. Our kids are great, and they have such

awesome personalities, and are so strong. They seem to be able to

endure and adapt to anything thrown their way. You need to look at

the photos section here and see all the wonderful kids. They are all

so special. I am glad you are here, and please keep asking

questions. Someone is bound to have an answer for you. And don't be

afraid to ask ANYTHING!

Jodi R.

's mom

> Im new to all this my son, which is about 8 months, was just

> diognosed with RSS. Im a litle over whelmed with all of this. If

any

> one has any thoughts for me. Or how to react on this I would

> apprciate this.

August 24, 2004

Hi Jing,

The phone number to make an appointment with Dr H is .

Her office address is 5 East 98th Street, NYC, NY. It is located

between Madison and Fifth avenues.

The last I knew she was not yet scheduling appointments with new

patients since she recently changes hospitals and is still getting

situated, but I would try calling anyway.

I have no idea what she charges, my insurance pays for it. You

could probably ask when you call.

Judith, Steve, (RSS) and (non RSS) 4 1/2 year old twins

August 24, 2004

Oops..........sorry.........no offense taken, I was just thinking of the

range of parents that can offer support......totally forgetting our adult

RSS contingent. That's what I get for writing late at night.

Sorry for the omission.

Debby

Re: New to this

>

> <<We have new borns all the way to late age teenagers in our midst>>

>

> WOW is that what we are calling 38 year olds now?? (LOL) Late

teenagers....

> I like it.....

>

> Mom to Liam (3 1/2 years old 34 3/4 " 27 lbs

> SGA / possible RSS, Hypothyriod, Epilepsy.) Started GHT 5/18/04

> and Jed (11 years old) Tourettes, CAPD,SVT.

> SW Orlando FL

>

> Check out my group:

> http://health.groups.yahoo.com/group/ToddlerswEpilepsy/?yguid=174302728

>

August 24, 2004

I meant to say " no offense INTENDED " ....................

Debby

Re: New to this

>

> >

> > <<We have new borns all the way to late age teenagers in our midst>>

> >

> > WOW is that what we are calling 38 year olds now?? (LOL) Late

> teenagers....

> > I like it.....

> >

> > Mom to Liam (3 1/2 years old 34 3/4 " 27 lbs

> > SGA / possible RSS, Hypothyriod, Epilepsy.) Started GHT 5/18/04

> > and Jed (11 years old) Tourettes, CAPD,SVT.

> > SW Orlando FL

> >

> > Check out my group:

> > http://health.groups.yahoo.com/group/ToddlerswEpilepsy/?yguid=174302728

> >

August 24, 2004

We just got a bill from our Dr Harbison visit at the former hospital (we saw

her in December) and since we were way out of our coverage area (california),

our HMO did not cover any part of it. It was for $450.00 (we were there for

about 6 or 7 hours, though, so the hourly rate isn't so bad

This was a different hospital than she is at now, though, and may have a

totally different fee schedule?

Kathy (Willie , 3 1/2 , RSS, Periactin, 33 " and 23.2 lbs)

August 28, 2004

Dear Judith and Kathy,

Thank you very much for responding to my question.

Jing

_______________________________________

EDSAMAIL. Internet the way YOU WANT IT.

www.edsamail.com.ph

September 14, 2004

,

The best advice I can give you is to go back about 2 months in the

posts and skim through them, I have been on the site off and on for

about a year and I have noticed that most topics are revisited about

every 2 to 3 months, so if you can get through two months of posts

you will cover most of the common issues. I read a few thousand of

the past posts and I learned an incredible amount. You can scroll

through them fairly quickly if you click on expand messages and just

skip the ones that are chatter. Don't hesitate to ask if you need

something cleared up or if you need any sort of reassurance or have

questions on anything you read.

This will probably be the fastest way to get the most amount of info.

Marsha

> I am about to go through orthognatic surgery in 2 months and wanted

> any insight anyone could give me. I had an open bite, but

according

> to my surgeon my othodonist has corrected that with the braces, so

I

> will be needing upper jaw surgery only and have elected to also

have

> genioplasty at the same time.

>

> Any insight would help....

>

> Thanks,

>

September 14, 2004