Re: Please help us understand RSS

[Guest guest]

Hi,

What is your name? My son Liam is 4 1/2 years old and has mild RSS.. Feeding

still is a nightmare, but he does not have a feeding tube, although we came

close.

Where do you live? my mom has breast cancer too....

Mom to Jed and Liam

Orlando Fl

Family and Breeding Website

[Guest guest]

Hello 's Mom!!

My name is Pat, and I am g-ma to Lee in the photo section.

was born at 39 weeks gestation, weighing 3# 5oz, and measuring only 15 "

long. He was diagnosed with RSS at 3 months of age. He is currently 3 yrs 7

months old, and weighs 24.5# and measures 33 " tall.

You've found a wonderful resource in your search for answers. The parents

here are knowledgeable, supportive, and wonderfully caring people!

RSS is a form of primordial dwarfism. When my g-son was diagnosed, we were

told that if he HAD to have a syndrome, this was a " good " one to have. From

what we've learned the early years are the hardest.

To help you find your way along, I would suggest also contacting the MAGIC

Foundation at http://magicfoundation.org/www

Their website if loaded with information on Silver. It's $30 a year

to obtain a membership, and their library of research articles is worth that

on it's own!

People with RSS live a normal life span. Some have GI complications, and

need a g-tube, others are good eaters but seem to need more calories than

your " average " child. had his triple procedure (fundoplication,

pyloroplasty, and g-tube placement) at 8.5 months of age, and it's been a

life-saver.

During the early years the most important things to watch for are

hypoglycemia, and getting adequate calories into your child. Insufficient

nutrition and low blood sugar can damage the developing brain, and compound

growth failure. As far as feeding goes, small amounts of high calorie

formula frequently and around the clock are best.

You are already treating for reflux, so that is very good! A LOT of our kids

seem to suffer from reflux. Another problem that seems to come up often is

delayed gastric emptying, meaning that their food doesn't move out of their

stomachs at a " normal " rate.

Have the Drs there tried an NG tube, to see if will gain weight?

This might be something to suggest, before a g-tube placement, but know that

a g-tube isn't the end of the world either. It's just another way to feed

your child, and many have found that it relieves a lot of the stress

associated with feeding!

If there's anything else I can answer, or you'd just like to chat, feel free

to contact me privately at pcpets@ adelphia.net (no space after the @)

Welcome to the group!!

Pat (g-ma to , RSS, 3 yrs 7 months old, 24.5#, 34 " , G-tube, GHT)

[Guest guest]

hi and welcome to this group of great support and info. my son is 4

1/2 and was born weighing 5lbs 8oz and 18 1/2 " he is now 29lbs and

38 " and is a happy, healthy, smart 4 1/2yr old. he also has

assmentry of his left side (leg is 1cm shorter than his right). he

goes to preschool 5x a week and receives OT and will begin PT in

sept at school. and will be getting a lift for his left shoe after

we see ortho in oct.

he doesnt have alot of the gut issues some of the kids face, but we

still have a daily battle to get calories into him. he doesnt have

a feeding tube at this point. he takes an appiteite stimulant 2x

daily and is on growth hormone shots at night as well.

have you checked ou the magic foundations web site yet?

www.magicfoundation.org they are a great non-profit org. for

families of children (and adults) with growth disorders. also there

is an expert dr in nyc, dr harbison is the US expert on RSS. pics of

him can be found under christopher in the photo section. feel free

to email me privately at jlcals2003@ yahoo.com (no space after @)

you are not alone, we have all been or are going through the

comments from other people and the worry. ((HUGS)) ask any

questions!! we also have some adults that belong to the list that

hopefully will respond to your message as well!!

jodie c (one of 4 jodis on the list)

nicholas-7 nonrss, christopher-4 1/2 rss 29lbs 38 " periactin, ght

genotropin, assmentry (left side 1cm), ADHD & OCD possible,

johnathon-2 nonrss)

[Guest guest]

Hi, my name is . My daughter is 5 1/2

and was originally diagnosed at 3 3/4 with RSS by a

geneticist at Columbia Presbyterian Hospital. She

was later seen (Jan and May of this year) by a

pediatric endo (Dr. Madeline Harbison) who specializes

in RSS who is in NYC at Mt. Sinai, who said she is not

RSS, however, growth failure. There are many families

on this listserve and who travel to NY to see her.

Has anyone told you about the MAGIC Foundation? Check

them out at www.magicfoundation.org. They are a

foundation for children will all kinds of growth

disorders.

B

5 1/2 and Kelli 3

--- slmi2005 wrote:

> Hello,

> My husband and I are going out of our minds with

> worry for our 4 and

> 1/2 month old- . The genetics Drs at s

> Hopkins in

> Baltimore are telling us they are leaning towards a

> diagnosis of

> RSS. was born on his due date (3/24/05) at

> 5lbs 9oz & 18

> inches. He is now 10lbs 6oz and 24 1/2 inches long.

>

>

> We have tried everything from formulas, nipples,

> bottles and feeding

> techniques. He has been hospitalized for tests and

> a feeding tube

> when he was 1 month old for failure to thrive. We

> thought this was

> behind us when we found out he had reflux and the

> Zantac medicine

> was helping until now.

>

> is not thriving again and we are now on 26

> cal formula with

> Previcid once a day. Feeding times are so stressful.

> He just spits

> out his formula. Today we are going on 13 hours

> since his last

> decent feeding which was 3 oz.

>

> If he does not " catch up " the drs are going to

> insert a feeding tube

> surgically. is our first child and as you

> can imagine we are

> worried sick. I can't sleep at night with all the

> talk about him

> possibly having RSS. I have searched everywhere for

> information and

> symptoms. I am beginning to think it is true because

> has one

> leg a little longer than the other, the triangular

> face, large

> forehead and curved pinky.

>

> Can someone please help me to understand this

> syndrome? Will

> live a " normal " live? Are there any similar

> syndromes that

> it can be misdiagnosed with?

>

> We love him unconditionally and we want to do

> everything possible to

> give him the best life we can. People have already

> begun the " boy

> he is small, he is a preemie " comments and of course

> I know is not a

> preemie. Someone even had the nerve to say " Wow he

> has a BIG

> head. " I was so upset I didn't know what to do.

>

> When I discovered this forum I finally found a

> little peace after

> seeing all the beautiful pictures of the children

> and I am hoping

> that talking to parents with help too. The children

> look happy and

> seem to be physically capable of most everything a

> child would

> enjoy. The medical jargon doesn't always speak the

> " truth " .

>

> I am hoping to hear from someone soon. You see I am

> so sick with

> fear and worry during this time we are also trying

> to cope with

> watching my Mother battle the final stages of

> advanced breast cancer

> and I already lost my father to cancer 12 years ago.

>

> Thank you for reading this.

>

>

>

>

____________________________________________________

Start your day with Yahoo! - make it your home page

http://www.yahoo.com/r/hs

[Guest guest]

Hi, there. I don't know your name, but I still want to jump in here

and help out. I'm one of the " senior " members of the listserve. My

son Maxwell is now 17 and has RSS. (I have a daughter Jenna who is

soon to be 20, but she does not have RSS.) I was one of the first

10 to join this listserve. Also, my husband and I started the first

RSS support group called The Association for Children with RSS.

That was when Max was about 8 months old. Within three years the

group grew to over 350 members from all over the world and was just

too much for us to handle. Fortunately, a member took it over,

joined with MAGIC and here we are! So, as you can see, we have

lived this for a relatively long time.

Anyway, Pat did a great job of telling you about your options, what

to look out for, the MAGIC Foundation, etc. I just thought I'd tell

you a little bit about Max and hopefully put your fears to rest. He

is truly our miracle child. (And before I forget, don't worry - if

the g-tube or ng tube do not help your little - my husband's

name - from vomiting, there is always a j-tube which bypasses the

stomach and goes into the large intestine. Most babies, children,

tolerate that much better if the other tubes are not working.)

Max has had just about everything there is to have: severe reflux,

malrotated intestines, hypoglycemia, ketotic hypoglycemia,

the " triple procedure " : fundoplication, g-tube, pyloraplasty (to

open up the bottom of his stomach to increase emptying time),

asthma, many hospitalizations, failure to thrive, learning

disabilities, pronated feet, poor muscle tone, and on and on. If

you read the characteristics of RSS, Max is the poster child. He

takes several medications to help the reflux, is on growth hormone,

has depression and anxiety and, to complicate things, Tourette

Syndrome (only facial tics and a shaky foot - no cursing, etc.)

BUT my very sick baby, then little boy, then teenager, has blossomed

in front of our eyes. He was so sick, so behind the other kids, so

tiny, always in and out of the hospital and such. Don't forget, he

was one of the oldest RSS kids, so doctors did not know as much

about RSS as they do now, so things were quite experimental and

complicated. Now when kids show signs of what Max did, the doctors

know exactly what it is and how to treat it, for the most part.

I am proud to say that Max is now 5'4 " and predicted to be 5'8 " . We

don't care anymore. He exceeded our expectations, so anything else

is gravy. He is going to be a junior in high school and is finally

going to take some classes that are not " replacement, " otherwise

known as self-contained. He is very social, liked very much by

adults, has friends, started driving (oy!) and has a sense of humor

that keeps us all laughing around here. His teachers love him. He

takes acting classes. He writes stories and love horror movies.

I hope this helps you feel better. I'm just trying to let you know

that things can seem so bleak, so doom and gloom, so scary, but in

the end, they can and do work out. RSS is not terrible, but no one

wants their kids to have a problem. No one wants their kids to be

different, to endure pain, to be sick, to be stuck with needles....

But in the longrun, it all pays off. There were many times when my

husband and I cried ourselves to sleep with worry over Max and what

he would turn out to be. But he is heading in the right direction

and will be a responsible, self-sufficient, happy adult. It's just

taking him a bit longer.

Please continue to post and to ask questions and to let us help

you. Eventually, you will figure this all out and you will find

yourself offering advice and support. It all comes around full

circle.

I have rambled on long enough. (I'm a special ed teacher and I'm on

my vacation now, so I have way too much time on my hands!) Just

know that will be okay. And, if you can, get yourselves up

here to NY (I'm in NJ) to see Dr. Harbison. It is worth the trip!!!

Jodi Z

[Guest guest]

First, you have made a great step discussing your feelings and

concerns here with this support group. As I can see from the other

posts, you have already recieved a wealth of information; thus, I

will not repeat any of it. Well - maybe one. Contact Magic. They

are your best resource - more than you can imagine.

Secondly, hopefully not speaking out of turn, what you are feeling

is completely normal. All of us here at some point or another have

felt your concerns, fear, sadness, and other emotions.

I remember having my first child. I was a nervous wreck. Why is he

crying? What does it mean when he can't burp? Why doesn't he stop

crying when I hold him? What do you mean I can't put him on his

tummy? What am I supposed to do again with that thing that was once

an umbilical cord? Ugh - it was so overwhelming. I can certainly

remember what you are probably feeling right now. And although you

have additional issues to face - what is absolutely fantastic is

that you are already an AMAZING parent! Look where you are at. You

are searching for answers. You are working with physicians and

trying your best every day to ensure that your child's health

endures. You are doing a terrific job. Keep reading, talking with

physicians and most importantly - enjoy your new child. You will do

fine and your child will do fine - because he has you.

Thinking of you.

- H

oh, ps - remember the thing about the umbilical cord? My husband

made me keep our children's. Yuck!

> Hello,

> My husband and I are going out of our minds with worry for our 4

and

> 1/2 month old- . The genetics Drs at s Hopkins in

> Baltimore are telling us they are leaning towards a diagnosis of

> RSS. was born on his due date (3/24/05) at 5lbs 9oz & 18

> inches. He is now 10lbs 6oz and 24 1/2 inches long.

>

> We have tried everything from formulas, nipples, bottles and

feeding

> techniques. He has been hospitalized for tests and a feeding tube

> when he was 1 month old for failure to thrive. We thought this

was

> behind us when we found out he had reflux and the Zantac medicine

> was helping until now.

>

> is not thriving again and we are now on 26 cal formula

with

> Previcid once a day. Feeding times are so stressful. He just

spits

> out his formula. Today we are going on 13 hours since his last

> decent feeding which was 3 oz.

>

> If he does not " catch up " the drs are going to insert a feeding

tube

> surgically. is our first child and as you can imagine we

are

> worried sick. I can't sleep at night with all the talk about him

> possibly having RSS. I have searched everywhere for information

and

> symptoms. I am beginning to think it is true because has

one

> leg a little longer than the other, the triangular face, large

> forehead and curved pinky.

>

> Can someone please help me to understand this syndrome? Will

> live a " normal " live? Are there any similar syndromes that

> it can be misdiagnosed with?

>

> We love him unconditionally and we want to do everything possible

to

> give him the best life we can. People have already begun the " boy

> he is small, he is a preemie " comments and of course I know is not

a

> preemie. Someone even had the nerve to say " Wow he has a BIG

> head. " I was so upset I didn't know what to do.

>

> When I discovered this forum I finally found a little peace after

> seeing all the beautiful pictures of the children and I am hoping

> that talking to parents with help too. The children look happy

and

> seem to be physically capable of most everything a child would

> enjoy. The medical jargon doesn't always speak the

> " truth " .

>

> I am hoping to hear from someone soon. You see I am so sick with

> fear and worry during this time we are also trying to cope with

> watching my Mother battle the final stages of advanced breast

cancer

> and I already lost my father to cancer 12 years ago.

>

> Thank you for reading this.

[Guest guest]

Hi 's mom,

I'm one of the RSS adults that lurk on this website to answer

questions like this... will he lead a normal life?

My life is so normal, it's incredibly boring. I'm 28, 4'8 " and around

90lbs (and gaining -- ugh; yes, RSS adults DO eat!!). I'm a graduate

student, married to a 6'1 " guy and just a very " normal " woman, albeit

short. Clothes shopping still stinks and I know where there are

stepstools (or chairs, or boxes, or books... those 13 years of

gymnastics are still paying off...), but that's really the extent to

which RSS affects me. My parents will tell you that the first year or

two are the worst BY FAR!

We adults are around if we can answer any of your questions (although

I think we're all women, so we can only offer the female perspective).

-Ana

[Guest guest]

Hi,

I see that you've gotten lots of responses from your

post, but I wanted to add mine. I'm a 23 year old

female with RSS. As Ana said in her post, my life is

so normal and typical that it's mostly downright

boring. I graduated from the University of Colorado

in May with a BA and I am now in law school at Seattle

University in Washington state. I am happy and well-

adjusted (well, as well-adjusted as a first year law

student can be <grin>). The other RSS adults that I

have had the pleasure of meeting and/or corresponding

with are also happy, well-adjusted people with

careers, families and all around full lives. The

early years are really, really tough, but things can

(and do) get better. Living a full and satisifying

life *is* possible with an RSS diagnosis. So, welcome

to this list and I know that you will receive the

support and understanding that you're looking for!

~Hillary

23, RSS

--- slmi2005 wrote:

> Hello,

> My husband and I are going out of our minds with

> worry for our 4 and

> 1/2 month old- . The genetics Drs at s

> Hopkins in

> Baltimore are telling us they are leaning towards a

> diagnosis of

> RSS. was born on his due date (3/24/05) at

> 5lbs 9oz & 18

> inches. He is now 10lbs 6oz and 24 1/2 inches long.

>

>

> We have tried everything from formulas, nipples,

> bottles and feeding

> techniques. He has been hospitalized for tests and

> a feeding tube

> when he was 1 month old for failure to thrive. We

> thought this was

> behind us when we found out he had reflux and the

> Zantac medicine

> was helping until now.

>

> is not thriving again and we are now on 26

> cal formula with

> Previcid once a day. Feeding times are so stressful.

> He just spits

> out his formula. Today we are going on 13 hours

> since his last

> decent feeding which was 3 oz.

>

> If he does not " catch up " the drs are going to

> insert a feeding tube

> surgically. is our first child and as you

> can imagine we are

> worried sick. I can't sleep at night with all the

> talk about him

> possibly having RSS. I have searched everywhere for

> information and

> symptoms. I am beginning to think it is true because

> has one

> leg a little longer than the other, the triangular

> face, large

> forehead and curved pinky.

>

> Can someone please help me to understand this

> syndrome? Will

> live a " normal " live? Are there any similar

> syndromes that

> it can be misdiagnosed with?

>

> We love him unconditionally and we want to do

> everything possible to

> give him the best life we can. People have already

> begun the " boy

> he is small, he is a preemie " comments and of course

> I know is not a

> preemie. Someone even had the nerve to say " Wow he

> has a BIG

> head. " I was so upset I didn't know what to do.

>

> When I discovered this forum I finally found a

> little peace after

> seeing all the beautiful pictures of the children

> and I am hoping

> that talking to parents with help too. The children

> look happy and

> seem to be physically capable of most everything a

> child would

> enjoy. The medical jargon doesn't always speak the

> " truth " .

>

> I am hoping to hear from someone soon. You see I am

> so sick with

> fear and worry during this time we are also trying

> to cope with

> watching my Mother battle the final stages of

> advanced breast cancer

> and I already lost my father to cancer 12 years ago.

>

> Thank you for reading this.

>

>

>

>

____________________________________________________

Start your day with Yahoo! - make it your home page

http://www.yahoo.com/r/hs

[Guest guest]

HI there... I feel like we are in the same boat. I

have a 3 month old and we are wondering if she has

RSS. One of her legs is shorter, her whole right side

of her body is smaller than the left... and her head

is big. I get tired of answering if she's a premiee..

I just want to type it out and hand it to people when

they ask.

I'm sorry to hear that your boy is having such a hard

time feeding. My girl has reflux.. but she eats very

well. I just joined the group last week and I have

already learned loads! Everyone is friendly and

helpful. The pictures helped me also... I added mine

today. Hang in there and this group is wonderful.

Pickett

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