New to This

May 13, 2005

,

Hi my name is chrissy and i have a 3 1/2 year old named Madison with RSS who

sees Dr. H or better known as Dr. Harbison. She is located in Manhattan Ny.

Where are you from>?

Chrissy

mom to

Louis 6

Madison 3 1/2

Shane 19 months

7months

May 13, 2005

Hi ,

Welcome to our group. I hope we can answer all your questions.

Where do you live? I live in southern New Hampshire near the

NH/Mass border. We initially took our son to Children's hospital

in Boston.

To answer your question, Dr. H is Dr. Madeline Harbison. She

practices in New York City. She has about 100 RSS patients and

is a presenter at the Magic Convention in Chicago in July.

Regarding your son, you might want to take him to a pediatric

endocrinologist. Also, it might be a good idea to go see a

geneticist. Often, it is the geneticist who makes a diagnosis

because RSS is a genetic disorder. However, it is a pediatric

endocrinologist who treats RSS. Many on this list have only seen

a pediatric endocrinologist. It depends on what medical

specialists you have access to.

In our case, it was a pediatric endocrinologist who made a

preliminary diagnosis and a geneticist who confirmed that.

What you can do in the mean time is to try and get as many

calories into your son as you can. Try switching to a high calories

formula if he still is on it. If he has graduated to cereal, try adding

a little butter and make the ceral with the higher calorie formula

or light cream. You can also ask your pediatrician about

periactin (cyproheptadine) to help stimulate his appetite.

Assuming of course, he has the same lack of appetite that is

typical of RSS kids.

Anyway, I hope this helps.

Ken M

> Hi! My name is and I have a 1 yr. old son named

Crosby who I believe may have RSS. He has not yet been

diagnosed, but shows quite a few symptoms. My pregnancy with

him was complicated by IUGR, and he was born at 36 weeks

weighing 2lbs. 13oz. / 16 inches long. I'm trying to do research

to find out what I need to do and more importantly, who I need to

take my son to. I noticed on the messages a lot of people talking

about a Dr. H. She seems like a good one. Where is she, and

how can I get in touch? ANY info would help. Thanks!

>

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>

May 14, 2005

Call or get in touch with the Magic Foundation. They are great.

New to this

Hi! My name is and I have a 1 yr. old son named Crosby who I believe

may have RSS. He has not yet been diagnosed, but shows quite a few symptoms.

My pregnancy with him was complicated by IUGR, and he was born at 36 weeks

weighing 2lbs. 13oz. / 16 inches long. I'm trying to do research to find out

what I need to do and more importantly, who I need to take my son to. I noticed

on the messages a lot of people talking about a Dr. H. She seems like a good

one. Where is she, and how can I get in touch? ANY info would help. Thanks!

---------------------------------

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May 14, 2005

Hi ,

Welcome to our group. First of all, based on the little bit of info

you gave about your son, he sounds much like 's beginning. Our

pregnancy was severe IUGR, too and he was born at 34 weeks weighing 2

lbs. 12 1/2 oz. and was 14 1/4 " long. He had many problems from the

start and meant he had to stay hospitalized for his first three months

of life! Worst thing for me ever. It was so hard because I couldn't

stay with him. I had another son at home that I had to take care of

while my husband was at work.

Anyway, Dr. Harbison is located in New York city and practices at Mt

Sinai in Manhattan. She is the one who diagnosed my son. He was 17

months old when she saw him and weighed 10 lbs. 10 oz. at the time!

Severe caloric deprivation. She is great and so helpful. If anyone

can diagnose your son, it would be her. She is the RSS expert in the

US. I hope you can get a diagnosis for your son to help get things

going for you guys.

The MAGIC Foundation is a wonderful organization that puts on a

Convention every July in Chicago. RSS is their biggest division. Last

year was my first year going and I am doing ervything I can to go again

this year. I wouldn't miss it for anything. You learn so much and Dr.

H is there to see the kids too. Look at their website. We would love

to hear more about Crosby.

Take care,

Jodi R.

, RSS, prilosec for reflux, and 100% fed through a feeding tube.

> Hi! My name is and I have a 1 yr. old son named Crosby who I

believe may have RSS. He has not yet been diagnosed, but shows quite a

few symptoms. My pregnancy with him was complicated by IUGR, and he

was born at 36 weeks weighing 2lbs. 13oz. / 16 inches long. I'm trying

to do research to find out what I need to do and more importantly, who

I need to take my son to. I noticed on the messages a lot of people

talking about a Dr. H. She seems like a good one. Where is she, and

how can I get in touch? ANY info would help. Thanks!

>

> ---------------------------------

> Yahoo! Mail Mobile

> Take Yahoo! Mail with you! Check email on your mobile phone.

>

May 14, 2005

Dear Jodi R.

Hi! It's Conny. I think you were gone for a while and then I have

been gone for a while, but I am back now. How is doing? How

are his lungs and how is his weight? Is he old enough for GH yet?

Is he going to be a candidate for that? OK. OK. I'll stop asking

questions. LOL Conny, Great-aunt to , SGA, 38 months, 33.5

inches and 24.5 pounds.

> > Hi! My name is and I have a 1 yr. old son named Crosby

who I

> believe may have RSS. He has not yet been diagnosed, but shows

quite a

> few symptoms. My pregnancy with him was complicated by IUGR, and

he

> was born at 36 weeks weighing 2lbs. 13oz. / 16 inches long. I'm

trying

> to do research to find out what I need to do and more importantly,

who

> I need to take my son to. I noticed on the messages a lot of

people

> talking about a Dr. H. She seems like a good one. Where is she,

and

> how can I get in touch? ANY info would help. Thanks!

> >

> > ---------------------------------

> > Yahoo! Mail Mobile

> > Take Yahoo! Mail with you! Check email on your mobile phone.

> >

May 14, 2005

Hi,

My daughter also was IUGR and delivered at 37 weeks at 4 lb 6 oz.

14.25 " . She is now 27 months and doing well. She just had her third

set of ear tubes placed Thursday (to help prevent hearing loss from

her many ear infections) and is now 31 " and 21 lbs (yay!). Last

year at this time I was posting just like you and now, because of

this group, things are SO much better! The other parents who have

been there can give the best advice and support because even if your

family and friends care they just haven't been there.

Where are you? We are in Rockland, MA about 30 minutes SE of Boston

on the way to Cape Cod.

There is an annual convention in Ch icago every year in July. As a

first time parent who went last year I say GO and you get a free

consultation with Dr. Harbison and attend 2 days of medical lectures

in addition to bingo night and meeting other parents! Some states

will help you pay through various programs, there is a folder on this

support group (KEN HELP?) that has a list by state. Last year the

state of MA reimbursed us $500 for the flights. MAGIC also has

scholarships to pay for your hotel, some meals and onsite convention

daycare for your little one.

Does Crosby get PT or OT through an Early Intervention program? Lots

of the kids have gross and fine motor delays so if you can get him

evaluated (I think in all states it is free until they are 3 years

old). Emerence gets both PT and OT. She started PT at age 3 months

2x week and now gets it 2x/month. She has gotten OT since about 1

year old 2x month to help with feeding issues. They have really

helped!

Try and post whre you are from - you may have a family nearby that

can meet with you or can recommend DRs in your area with RSS/SGA

experience.

Welcome!

, mom to 5 and Emerence,2 RSS/SGA 31 " and 21 lb 3rd set

of ear tubes!!!!

> Hi! My name is and I have a 1 yr. old son named Crosby who

I believe may have RSS. He has not yet been diagnosed, but shows

quite a few symptoms. My pregnancy with him was complicated by IUGR,

and he was born at 36 weeks weighing 2lbs. 13oz. / 16 inches long.

I'm trying to do research to find out what I need to do and more

importantly, who I need to take my son to. I noticed on the messages

a lot of people talking about a Dr. H. She seems like a good one.

Where is she, and how can I get in touch? ANY info would help.

Thanks!

>

> ---------------------------------

> Yahoo! Mail Mobile

> Take Yahoo! Mail with you! Check email on your mobile phone.

>

May 15, 2005

Hi Ken,

You say that it is the geneticist that diagnosis RSS but the endo that treats,

correct? What do you suppose I do or think. A geneticist diagnosed with

RSS and a local endo, but Dr. H says no. When first saw the geneticist

and the local endo, she had more pronounced features then she does now. She saw

Dr. H for the first time three months ago. I guess it almost doesn't matter

since the treatment is the same. Just curious.

A side note here Ken, where in the NE area can I get a Patriots tire cover. We

have a Jeep Liberty and my husband wants one. I figured a good father's day

gift. He's a little afraid to get it (for this Giants/Jets area - we are in

NJ). He's thinking someone might key up the car but I don't think so.

Thanks

B

5 and Kelli 2 3/4

kmerrith wrote:

Hi ,

Welcome to our group. I hope we can answer all your questions.

Where do you live? I live in southern New Hampshire near the

NH/Mass border. We initially took our son to Children's hospital

in Boston.

To answer your question, Dr. H is Dr. Madeline Harbison. She

practices in New York City. She has about 100 RSS patients and

is a presenter at the Magic Convention in Chicago in July.

Regarding your son, you might want to take him to a pediatric

endocrinologist. Also, it might be a good idea to go see a

geneticist. Often, it is the geneticist who makes a diagnosis

because RSS is a genetic disorder. However, it is a pediatric

endocrinologist who treats RSS. Many on this list have only seen

a pediatric endocrinologist. It depends on what medical

specialists you have access to.

In our case, it was a pediatric endocrinologist who made a

preliminary diagnosis and a geneticist who confirmed that.

What you can do in the mean time is to try and get as many

calories into your son as you can. Try switching to a high calories

formula if he still is on it. If he has graduated to cereal, try adding

a little butter and make the ceral with the higher calorie formula

or light cream. You can also ask your pediatrician about

periactin (cyproheptadine) to help stimulate his appetite.

Assuming of course, he has the same lack of appetite that is

typical of RSS kids.

Anyway, I hope this helps.

Ken M

> Hi! My name is and I have a 1 yr. old son named

Crosby who I believe may have RSS. He has not yet been

diagnosed, but shows quite a few symptoms. My pregnancy with

him was complicated by IUGR, and he was born at 36 weeks

weighing 2lbs. 13oz. / 16 inches long. I'm trying to do research

to find out what I need to do and more importantly, who I need to

take my son to. I noticed on the messages a lot of people talking

about a Dr. H. She seems like a good one. Where is she, and

how can I get in touch? ANY info would help. Thanks!

>

> ---------------------------------

> Yahoo! Mail Mobile

> Take Yahoo! Mail with you! Check email on your mobile phone.

>

May 15, 2005

Hi

Welcome. I know by now you have noticed the support of this great place. My

name is and I have two daughters, 5 and Kelli 2 3/4. was

also born at 36 weeks and weighed 5.0 lbs and 18 1/4 inches. I had pre term

labor, however, the doctor's blew me off as braxton hicks. was diagnosed

with RSS by a geneticist at age 3 3/4. She went to a local endo at age 4 1/4.

She was recently seen by Dr. Harbison (Dr. H) three months ago who does not

believe she is RSS but wants to track her every three months. also at

age 3 3/4 had open heart surgery to close a large hole in her heart. She turned

5 on Dec 27. She currently weighs (3 months ago at her visit) 30.2 pounds and

about 38 1/2 inches.

B

5 and Kelli 2 3/4

matthew barrett wrote:

Hi! My name is and I have a 1 yr. old son named Crosby who I believe

may have RSS. He has not yet been diagnosed, but shows quite a few symptoms.

My pregnancy with him was complicated by IUGR, and he was born at 36 weeks

weighing 2lbs. 13oz. / 16 inches long. I'm trying to do research to find out

what I need to do and more importantly, who I need to take my son to. I noticed

on the messages a lot of people talking about a Dr. H. She seems like a good

one. Where is she, and how can I get in touch? ANY info would help. Thanks!

---------------------------------

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Take Yahoo! Mail with you! Check email on your mobile phone.

May 17, 2005

Hi Everyone,

I may be jumping the gun, but I have been reading your posts for a

few days now, and I feel numb. My son is 13 months old 26 " and 14#. I

was diagnosed with IUGR at 32 weeks. I went through the bedrest and

constant non-stress tests and perinatologist visits for ultrasounds

until I was induced at 37 weeks. Troupe was born without

complications weighing 4lbs 3oz, and 16inches long, gestational age

38 weeks. He went home 3 days later at 3 lbs. 14oz. He did fine with

temperature control, maintaining his blood sugar, and feeding. On a

freak chance we found out he had a heart defect when he was 5 days

old, but that has healed on its own. I guess I am posting becauses I

really don't know what to do with myself, I feel a million emotions

everyday ranging from anger, to complete elation for my most precious

gift, to utter sadness, to fear of the unknown. No one ever mentioned

RSS until 3 months ago when we finally saw a geneticist at the

recommendation of his new cardiologist (we moved from Seattle to

Mobile). The geneticist said he wasn't convinced it was RSS, but he

says he does have some traits (confirmed by the endocrinologist) like

a triangular shaped face, below 3 percentile in wt and ht (still),

delayed bone age of 2 standard deviations below the mean, and a poor

appetite (he will chug bottles all day long and graze on solid stuff,

but hates sitting in the high-chair for a meal). (I can probably

count on my hands the number of times he has actually finished a jar

of baby food. Although, I have to say, he has a real interest in what

we are eating). But he doesn't have any asymmetry or motor delays. He

has hit every developmental milestone on target, or ahead. He has has

no problem crawling, walking, climbing, or literally climbing the

walls. The only possible delay is speech, he babbles contantly and

points " ba-ba " , " ma-ma " , etc. but no discernable words yet. I guess

it is a little early to call it a delay. So we finally got blood

drawn for the UPD 7 test and endo stuff last week, and I won't know

the results of the UPD for about a month. I feel like I'm in limbo. I

read all of these things about feeding tubes, appetite enhancers, and

growth hormone treatment and I feel like crying. I know that is

selfish, but I don't know what to do or if I'm even doing enough. I

can't find any information on adults with RSS, and I know it is not a

new phenomenon. What kind of results do they have with growth

hormones? My endocrinologist said they response with RSS is good, but

is that GOOD enough????? Can he still participate in sports and other

activities like other children if we're trying to conserve calories

for growth????? I don't know what to do. Is there a chance it isn't

RSS, do other children experience this type of growth delay without

having RSS?

May 17, 2005

Hi!

Welcome! I was in your shoes last year. Troupe sounds very similar

to Emerence - she is definitely on the lighter end of RSS towards

SGA. She also was IUGR and delivered at 37 wks 4 lb 6 oz 14.25 " . We

went to the annual convention in Chicago last July (you really should

go this year!) Dr. Harbison saw Emerence last year and wavered

between RSS and SGA (small for gestation age) and went SGA,

Emerence's geneticist followed her for a year and decided she

definitely and clinically fits RSS because of her many features, but

all mild. She has had eating/feeding issues and has received OT for

them but has never needed a tube. I knew from 20 weeks gestation on

we were in trouble - a 3 hour ultrasound with 3 techs and one

specialist does that to you! We have had the UPD7 test but only 10%

of RSS kids show up positive...Emerence was negative. I am someone

who feels much better when I'm in control of the situation so I have

actively taken on a role of learning about RSS/SGA and informing

others. I have also joined the Magic Foundation, the umbrella

organization that covers RSS...magicfoundation.org

My daughter is completely active and has been at daycare since she

was 3 months old (just shy of 8 lbs). She holds her own very well

even as the oldest, but smallest in her class. She transitions up

next week to the nursery room where most kids will outweigh and tower

over her but she will be fine. She runs and plays just like all

other kids. In fact, I think she has more energy and sleeps less

(lots of parents here seem to agree that our kids are like energizer

bunnies!). She will start GH probably in the fall. My understanding

is that GH doesn't just increase height but also muscle mass and

tone, increases bone mass and reduces hypoglycemia. Just to give you

an idea, we did a walk a thon in October with another RSS family with

a 5 year old boy. Their son was classic RSS and tube fed - and had

been on growth hormone for 2 years. Their son was taller than my OWN

NON RSS son!

Just hang in, maybe print out posts you want to think about or show

to your doctor ... keep a 3 ring binder with information you find

out so you don't feel so overwhelmed and if you wnat to re=read

something you will have it.

Also, all the parents here are extremely helpful - post and ask

questions - you will get answers! AND, try and come to

Chicago...also, post where you are from and you might have a family

hnearby???

, mom to , 5 and Emerence,2 RSS/SGA 31 " 21lb

> Hi Everyone,

>

> I may be jumping the gun, but I have been reading your posts for a

> few days now, and I feel numb. My son is 13 months old 26 " and 14#.

I

> was diagnosed with IUGR at 32 weeks. I went through the bedrest and

> constant non-stress tests and perinatologist visits for ultrasounds

> until I was induced at 37 weeks. Troupe was born without

> complications weighing 4lbs 3oz, and 16inches long, gestational age

> 38 weeks. He went home 3 days later at 3 lbs. 14oz. He did fine

with

> temperature control, maintaining his blood sugar, and feeding. On a

> freak chance we found out he had a heart defect when he was 5 days

> old, but that has healed on its own. I guess I am posting becauses

I

> really don't know what to do with myself, I feel a million emotions

> everyday ranging from anger, to complete elation for my most

precious

> gift, to utter sadness, to fear of the unknown. No one ever

mentioned

> RSS until 3 months ago when we finally saw a geneticist at the

> recommendation of his new cardiologist (we moved from Seattle to

> Mobile). The geneticist said he wasn't convinced it was RSS, but he

> says he does have some traits (confirmed by the endocrinologist)

like

> a triangular shaped face, below 3 percentile in wt and ht (still),

> delayed bone age of 2 standard deviations below the mean, and a

poor

> appetite (he will chug bottles all day long and graze on solid

stuff,

> but hates sitting in the high-chair for a meal). (I can probably

> count on my hands the number of times he has actually finished a

jar

> of baby food. Although, I have to say, he has a real interest in

what

> we are eating). But he doesn't have any asymmetry or motor delays.

He

> has hit every developmental milestone on target, or ahead. He has

has

> no problem crawling, walking, climbing, or literally climbing the

> walls. The only possible delay is speech, he babbles contantly and

> points " ba-ba " , " ma-ma " , etc. but no discernable words yet. I guess

> it is a little early to call it a delay. So we finally got blood

> drawn for the UPD 7 test and endo stuff last week, and I won't know

> the results of the UPD for about a month. I feel like I'm in limbo.

I

> read all of these things about feeding tubes, appetite enhancers,

and

> growth hormone treatment and I feel like crying. I know that is

> selfish, but I don't know what to do or if I'm even doing enough. I

> can't find any information on adults with RSS, and I know it is not

a

> new phenomenon. What kind of results do they have with growth

> hormones? My endocrinologist said they response with RSS is good,

but

> is that GOOD enough????? Can he still participate in sports and

other

> activities like other children if we're trying to conserve calories

> for growth????? I don't know what to do. Is there a chance it isn't

> RSS, do other children experience this type of growth delay without

> having RSS?

May 19, 2005

Oh it did, I can still do more push ups than the boys lol. Being so small makes

it a lot easier in many ways to do gymnastics. As long as she sticks with it

she'll get a heck of a lot stronger and more confident I'm positive = ) I

started out in advanced beginner at 3 and stayed there for about 7 years LOL,

they just wouldn't move me up. I finally got to team and then quit at 13 because

I was getting hurt more (never broke anything, just slight sprains) and I just

sort of had gotten what I had needed to from doing it. Encourage her to keep

practicing, but watch that she doesn't get really woren out, I still don't know

where that line is for me, i'll do it until i can't stand up for a while LOL. Do

you practice with her at all? you can help her by holding your arm out and

having her do a back walkover over it, it's the oddest senstaion to drop

backwards towards the ground lol so that makes it's less scary until she gets

the hang of it = ) Best wishses to both you and Tori.

*leah*

Did Gymnastics help build muscle strength in your arms? I just started Tori in

it and there is allot she can not do yet,but hopefully will be able to soon she

is very determined she does not like the fact she can't do some things and keeps

trying until she gets it.

JAMIE

Re: Re: New to This

Ana,

wait...another adult with rss????? HI lol. i did gymnastics for 10 years to help

with balance problems due to chronic ear infections. I'm also about 4'8. this is

crazy lol. hope all is well.

*leah*

hu99am43 wrote:

Hi Amelietrice,

Welcome to the group! I can't answer most of your questions, but as

an adult with RSS I hope I can address some of your fears for

Troupe's future. Although he'll probably never be an NBA star or a

linebacker on the football team, he'll probably be able to

participate in sports -- I did gymnastics for 13 yrs and Hillary

(another RSS adult on the list) participated in bunches of sports in

high school! I never had GH (or any other medical intervention).

I'm now (almost) 4'8 " . I'm also happily married (he's 6'1 " ) and a

graduate student. I've really lived a very typical life, except

that I know where every nearby stepstool is, I get to buy cheaper

clothes (when I can find ones without cartoon characters) and I can

climb grocery store shelves better than anyone I know (those years

of gymnastics lessons paid off)!

My parents and other parents of older RSS kids will tell you that

the first few years are the toughest!! Keep feeding Troupe whenever

you can, treat him as his age (not his size) and keep reading here --

the parents here will really help you out!

If I can answer any questions, just lemme know!

-Ana (28, RSS)

---------------------------------

May 20, 2005

Thanks we are taking our time. I am not pushing she does that herself well

hopefully it will help gain strength in her arms.