Re: New here with intro and questions (long)

June 20, 2001

Wow, , you have a lot to ask and I am so glad that you have found us.

First of all, I think you should check out the website for the Magic

Foundation. The address is www.magicfoundation.org. It is an organization

of many different growth disorders and there is a separate section for RSS.

I think that many of your questions will be answered there. Also, please

feel free to email me directly at z4all@... (I'm the Email

Coordinator for Magic and I have an almost 13 year old son with RSS - and an

almost 16 year old daughter without RSS.) You can also email Salem

who is the RSS Division Coordinator. Her email is magicrss@... .

I will tell you more about Magic in a private email so that this message

does not look like an advertisement for Magic, which it is not.

I hear that you are very concerned about your son. Many of us have been in

your shoes and understand completely. We even have a few parents of twins,

where one has RSS and the other doesn't, and there is a mom of triplets,

too!

Your best bet for now, however, is really to read the many responses you

will probably get and to check out the Magic website. It is scary to know

that there may be something " wrong " with your child, but when you read more

about it, you will see that it is not so bad. Yes, the day to day dealings

can be worrisome and there are definitely things to consider, but Colin will

be a healthy, happy, productive grown-up - which is an important thing to

keep in mind.

In the meantime, please feel free to ask any questions that come to your

mind. We are a lively group and try hard to help each other out. It would

help a lot, however, if you could tell me where you live. There may be

people that live in your area and even doctors that we all might recommend.

For example, in NYC, there is Dr. Madeleine Harbison who has over 100 RSS

patients in her practice. She is our resident medical advisor, mentor and

many other things.

Enough talk for now. You need to digest all of this and then come up with

more questions. Hang in there. It will all be okay. I promise.

Jodi

New here with intro and questions (long)

> Hi,

> My name is and I have 6 mo. old boy/girl twins. My son Colin

> was IUGR and at 37 weeks was born at 4.3, 17 " . His twin was 6.8, 19 " .

> He has struggled with reflux and projectile vomiting since birth and

> as a result developed an oral aversion to the bottle and refuses to

> eat while awake. He takes about 20 oz. a day on average all while

> sleeping.

>

> He is now about 13.5 at 6.5 mo. and almost 24 " . We have been to many

> doctors trying to figure out why he refuses to eat, and recently the

> geneticist to determine why he is so small. We had just assumed he

> was small because he didn't eat. His twin is now in the 90% for

> height and 55% for weight.

>

> Yesterday Colin's physical therapist by mistake mentioned that they

> believe he has RSS. She assumed the doctors had told us. I have done

> some reading and he does appear to have all the symptoms. He has the

> large forehead, small pointy chin, small downturned mouth, lowset

> ears, low tone, sweaty head, hyperactive, and the fifth finger thing,

> among others.

>

> This has all come as quite a shock to my husband and I. Our families

> are both tall. My husband is 6.1 and I'm 5.7. My father is 6.6! So

> from what I've read online short stature is the primary concern with

> this disorder. Can they determine how tall they will be this early

> on? What is average for a male? Are the growth hormones effective?

> When do they start treatment? What else can be done for these kids?

> Realistically how is this going to impact his life? What kinds of

> medical intervention will he need? I just want to prepare myself for

> this and know what to expect? Will eating always be a struggle for

> him? How common is this disorder?

>

> It is so especially hard because he is a twin and his sister is

> growing so well. I have a feeling she will be tall and that will be

> hard on him growing up always in comparison to his sister.

>

> How do all of you deal with this? I am still in such a state of

> shock. We are waiting on a bone age study, a chromosome study, and a

> kidney ultrasound before the final diagnosis is determined, but it

> really sounds like this is it.

>

> Is there a way to post a picture so you could look at him and see if

> you think he has it?

>

> Thanks for listening....

>

June 20, 2001

Hi Jodi,

I'm in Portland, OR, a long way from NY! We are currently working

with Emanuel Children's Hospital.

Thanks for your note -

> Wow, , you have a lot to ask and I am so glad that you have

found us.

> First of all, I think you should check out the website for the Magic

> Foundation. The address is www.magicfoundation.org. It is an

organization

> of many different growth disorders and there is a separate section

for RSS.

> I think that many of your questions will be answered there. Also,

please

> feel free to email me directly at z4all@g... (I'm the Email

> Coordinator for Magic and I have an almost 13 year old son with

RSS - and an

> almost 16 year old daughter without RSS.) You can also email

Salem

> who is the RSS Division Coordinator. Her email is magicrss@m... .

> I will tell you more about Magic in a private email so that this

message

> does not look like an advertisement for Magic, which it is not.

>

> I hear that you are very concerned about your son. Many of us have

been in

> your shoes and understand completely. We even have a few parents

of twins,

> where one has RSS and the other doesn't, and there is a mom of

triplets,

> too!

>

> Your best bet for now, however, is really to read the many

responses you

> will probably get and to check out the Magic website. It is scary

to know

> that there may be something " wrong " with your child, but when you

> about it, you will see that it is not so bad. Yes, the day to day

dealings

> can be worrisome and there are definitely things to consider, but

Colin will

> be a healthy, happy, productive grown-up - which is an important

thing to

> keep in mind.

>

> In the meantime, please feel free to ask any questions that come to

your

> mind. We are a lively group and try hard to help each other out.

It would

> help a lot, however, if you could tell me where you live. There

may be

> people that live in your area and even doctors that we all might

recommend.

> For example, in NYC, there is Dr. Madeleine Harbison who has over

100 RSS

> patients in her practice. She is our resident medical advisor,

mentor and

> many other things.

>

> Enough talk for now. You need to digest all of this and then come

up with

> more questions. Hang in there. It will all be okay. I promise.

>

> Jodi

>

> New here with intro and questions (long)

>

> > Hi,

> > My name is and I have 6 mo. old boy/girl twins. My son Colin

> > was IUGR and at 37 weeks was born at 4.3, 17 " . His twin was 6.8,

19 " .

> > He has struggled with reflux and projectile vomiting since birth

and

> > as a result developed an oral aversion to the bottle and refuses

to

> > eat while awake. He takes about 20 oz. a day on average all while

> > sleeping.

> >

> > He is now about 13.5 at 6.5 mo. and almost 24 " . We have been to

many

> > doctors trying to figure out why he refuses to eat, and recently

the

> > geneticist to determine why he is so small. We had just assumed he

> > was small because he didn't eat. His twin is now in the 90% for

> > height and 55% for weight.

> >

> > Yesterday Colin's physical therapist by mistake mentioned that

they

> > believe he has RSS. She assumed the doctors had told us. I have

done

> > some reading and he does appear to have all the symptoms. He has

the

> > large forehead, small pointy chin, small downturned mouth, lowset

> > ears, low tone, sweaty head, hyperactive, and the fifth finger

thing,

> > among others.

> >

> > This has all come as quite a shock to my husband and I. Our

families

> > are both tall. My husband is 6.1 and I'm 5.7. My father is 6.6!

So

> > from what I've read online short stature is the primary concern

with

> > this disorder. Can they determine how tall they will be this early

> > on? What is average for a male? Are the growth hormones effective?

> > When do they start treatment? What else can be done for these

kids?

> > Realistically how is this going to impact his life? What kinds of

> > medical intervention will he need? I just want to prepare myself

for

> > this and know what to expect? Will eating always be a struggle for

> > him? How common is this disorder?

> >

> > It is so especially hard because he is a twin and his sister is

> > growing so well. I have a feeling she will be tall and that will

be

> > hard on him growing up always in comparison to his sister.

> >

> > How do all of you deal with this? I am still in such a state of

> > shock. We are waiting on a bone age study, a chromosome study,

and a

> > kidney ultrasound before the final diagnosis is determined, but it

> > really sounds like this is it.

> >

> > Is there a way to post a picture so you could look at him and see

if

> > you think he has it?

> >

> > Thanks for listening....

> >

June 20, 2001

Dear ,

Welcome to our group. My little boy is 19 mths old - we only found

out about RSS a few months ago and like many other people in this

group we still don't have a firm diagnosis....but that doesn't matter

becuase so many of the children share the same symptomes/issues

anyway. We have received so much help, advice comfort and support

from the people here - and I'm sure you will too. Like you we were

very concerened when we first learned about RSS - but we have learned

much more about it now and feel much more relaxed about Finlays

future.

I second Jodi's advice about tapping into Magic - we joined recently

and have made use of many of the resources. They have growth charts

for the projected height potential of children with RSS without

growth hormone treatment as well as a library of articles written

about research into RSS. we also purchased the videos of lectures

from the last convention. the lectures were by 2 experts in the

field of RSS/SGA dr Madeleine Harbison and Dr Harmut Wollman

(actually I'm sure I have got his name wrong - someone will hopefully

correct me??) he is from Germany

THe other advice I would echo is to look through the many posts to

this site - I learned so much from doing that and was so reassured

to find so many parents facing exactly the same issues nad emotions

as we were.

And keep asking us all questions!!! When I first joined I had

zillions of questions which I asked and asked and asked!!! I felt

very supported here.

You can post a photo of Colin into the files section of this list -

or what some others have done is put together a web site at

www.growthspurts.com with photos and growth data - here is the link

to Finlays if you want to have a look....

http://www.growthspurts.com/view.asp?s=45416/

Good luck with your research, you've come to the right place!

(mum to Finlay 19 mths 16lbs 15 oz, 28 inches, Wellington, New

Zealand)

> Hi,

> My name is and I have 6 mo. old boy/girl twins. My son Colin

> was IUGR and at 37 weeks was born at 4.3, 17 " . His twin was 6.8,

19 " .

> He has struggled with reflux and projectile vomiting since birth

and

> as a result developed an oral aversion to the bottle and refuses to

> eat while awake. He takes about 20 oz. a day on average all while

> sleeping.

>

> He is now about 13.5 at 6.5 mo. and almost 24 " . We have been to

many

> doctors trying to figure out why he refuses to eat, and recently

the

> geneticist to determine why he is so small. We had just assumed he

> was small because he didn't eat. His twin is now in the 90% for

> height and 55% for weight.

>

> Yesterday Colin's physical therapist by mistake mentioned that they

> believe he has RSS. She assumed the doctors had told us. I have

done

> some reading and he does appear to have all the symptoms. He has

the

> large forehead, small pointy chin, small downturned mouth, lowset

> ears, low tone, sweaty head, hyperactive, and the fifth finger

thing,

> among others.

>

> This has all come as quite a shock to my husband and I. Our

families

> are both tall. My husband is 6.1 and I'm 5.7. My father is 6.6! So

> from what I've read online short stature is the primary concern

with

> this disorder. Can they determine how tall they will be this early

> on? What is average for a male? Are the growth hormones effective?

> When do they start treatment? What else can be done for these

kids?

> Realistically how is this going to impact his life? What kinds of

> medical intervention will he need? I just want to prepare myself

for

> this and know what to expect? Will eating always be a struggle for

> him? How common is this disorder?

>

> It is so especially hard because he is a twin and his sister is

> growing so well. I have a feeling she will be tall and that will be

> hard on him growing up always in comparison to his sister.

>

> How do all of you deal with this? I am still in such a state of

> shock. We are waiting on a bone age study, a chromosome study, and

a

> kidney ultrasound before the final diagnosis is determined, but it

> really sounds like this is it.

>

> Is there a way to post a picture so you could look at him and see

if

> you think he has it?

>

> Thanks for listening....

>

June 20, 2001

Hi ,

My name is Cheryl and I have 3 year old triplets, , , and

. is my RSS son. I'm sure others will post as to what kinds

of medical interventions you might be in for, but let me start by saying

you're not alone in this process. It is very difficult in the beginning to

learn your child " has something wrong with him/her " . I was in shock as well

when we first learned of s diagnosis. It does get a easier over time

when you've had a chance to digest things, learn more about RSS, and then

figure out what road you shall travel on. The main concern with RSS is

short-stature but for some kids, including my , it can potentially go

past just that. We learned that had RSS at 18 months, severe

congenital scolisios at 20 months as well as having a single kidney, then to

top things off at 23 months learned he's profoundly deaf. Deafness is not a

characteristic of RSS, but scoliosis is a potential as well as having a

single kidney. He also had 1 undescended teste / hernia that needed to be

corrected.

To give you background on my triplets, they were born at 34 wks., was

1.13 lbs., 14-1/2 " , was 4.5 lbs., 17-1/2 " , and was 5.1 lbs.,

19-1/2 " . The main reason for my delivery (I had a c-section) was

wasn't growing and we didn't know why. We thought he was small cause he

wasn't properly nutritioned in the womb, but boy were we wrong. As my kids

have gotten older the span in size between and /Jen has

significantly grown. is off the chart, Jen's in the 90th percentile,

and 's not even on the chart. So we say, what chart? It means

nothing in my house. We call being on the chart. He's in

the percentile. It's hard watching my kids being the exact same age

with such a size difference. You will probably get comments over time of

people thinking there's a year or two between them and noone will believe you

when you say they're twins. I argue with people all the time cause they

don't believe I've got triplets. They think my kids are either a year apart

from one another or I have twins and one other. But, that's all another

story I'll save for when you're kids are older. Comments - LOL!

Overall, my is doing great. He's growing at his own pace (with the

help of a feeding tube and oral eating), his deafness has somewhat been

corrected with the aid of a Cochlear Implant which allows deaf kids to hear,

and right now we're waiting to see what we're going to do with the

scoliosis. He will eventually need back surgery, but time will tell. His

single kidney is functioning fine - we just monitor it 1X/year. And, I guess

that's about it. He's a wonderful little boy that I'm glad to have part of

our family.

Take one day at a time and check out www.magicfoundation.org when you get a

chance. That will give you more info on RSS. Good luck and feel free to

write if you should have any questions for me.

Cheryl

Mom to , , and - all 3

jebarker@... wrote: