Re: New to This

[Guest guest]

Welcome you and family aboard. This is the best cf place in all of cyberspace!

The water is always fine, so you can just dive right in; you have actually

already

made the big plunge! We have a great giant cruise heading toward a cure and

coping with cf, and yes you are right about the liklihood of your child's

mutations

giving her less severe disease. We have great Captains (moderators),

scintillating

passengers (people like you), and because you have joined us that is why this is

such a great list! Amidst even tragedy, we manage to mix in genuine

information,

humor, anecdotes, moans and groans, and even on occasion, hilarity. Thank you

for joining us to continue the tradition of cfparents!

Love to you and to yours, n Rojas, wcf, mom to 3 WILD grown adulds, the

youngest of whom has cf, too--we are all still kicking--wildly! Just pull up a

deck

chair here and settle in!

new to this

hi everyone - i am new, i hope i am doing this right. i have a

barely 3 month old baby, , who was diagnosed with " mild " Cf -

she has the delta F508 and R117H mutation - does anyone else have

this? she tested 29 for the sweat test, is gaining weight and is

otherwise asymptomatic, so far. does anyone else have this mutation,

is it really mild? i am so scared, she is the light of my life. we

had no clue we were carriers. if anybody could please write me, i

would appreciate it so much.

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

The opinions and information exchanged on this list should IN NO WAY

be construed as medical advice.

PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS.

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

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

[Guest guest]

brynn,

welcome! I have a 32 month old boy named nathan with double f 508 and so I don't

know anything about the severity of your child's mutation. but just want you to

know we all can relate to your feelings. ive been with my husband for 20 yrs and

we have only been married 4 yrs and the pregnancy and fact that we were carriers

was a complete shock, nathan was born 6 weeks early with meconium ilius and had

a colostomy done at 11 hrs old. we stayed up in nicu for 2 months. I was in

shock for I would say first yr re: cf ,this group has helped a lot, I read a lot

and we are very open about it. get involved do the great strides walk in your

area. take 1 day at a time!

amy mom to nate the great 2.5 wcf

new to this

hi everyone - i am new, i hope i am doing this right. i have a

barely 3 month old baby, , who was diagnosed with " mild " Cf -

she has the delta F508 and R117H mutation - does anyone else have

this? she tested 29 for the sweat test, is gaining weight and is

otherwise asymptomatic, so far. does anyone else have this mutation,

is it really mild? i am so scared, she is the light of my life. we

had no clue we were carriers. if anybody could please write me, i

would appreciate it so much.

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

The opinions and information exchanged on this list should IN NO WAY

be construed as medical advice.

PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS.

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

[Guest guest]

Hi,(i didn't see your name )

My son also has delta f508, but i cant rmember if its twin or with

something else.To be honest, they never told me, I asked(probably so

I'd have something else to dwell on,lol).They said everyone is so

unique that the mutation would not really be indicative of how his

health will be.Maybe they told me that because they thought he had

the worst, I dunno!Oh well, so far his health has been pretty good,

and he's almost 9.Just had his 1st iv treatment, and got gallbladder

out, pretty good for 9 yrs, eh?Its funny, cuz i tried to call cf

nurse yesterday(gone for holiday til 2nd of Jan), to find out what

his mutation is.I have heard it said that your childs mutations are

mild, but in this book I read that you may not w/ R117 be facing the

GI problems such as one like my son does.

Sorry I'm babbling, I just woke up.I fell off my 3 yr olds scooter

yesterday, feel like 100 yrs old(Kids couldnt POSSIBLY take me

serious now, I had to look so funny airborne, than rolling thru

street when i fell, hee hee! LOLOLOL)...still hurts to laugh, OMG I'm

getting old I think.

Any ways, glad we have one more person to talk to on this group, hope

to hear more about you later.

Patty, mom to Tyler,8,wcf and 2 lil ones wocf, in the Sunshine State

> hi everyone - i am new, i hope i am doing this right. i have a

> barely 3 month old baby, , who was diagnosed with " mild " Cf -

> she has the delta F508 and R117H mutation - does anyone else have

> this? she tested 29 for the sweat test, is gaining weight and is

> otherwise asymptomatic, so far. does anyone else have this

mutation,

> is it really mild? i am so scared, she is the light of my life.

we

> had no clue we were carriers. if anybody could please write me, i

> would appreciate it so much.

[Guest guest]

In a message dated 12/30/2003 12:38:09 AM Central Standard Time,

brynn9779@... writes:

hi everyone - i am new, i hope i am doing this right. i have a

barely 3 month old baby, , who was diagnosed with " mild " Cf -

she has the delta F508 and R117H mutation - does anyone else have

this? she tested 29 for the sweat test, is gaining weight and is

otherwise asymptomatic, so far. does anyone else have this mutation,

is it really mild? i am so scared, she is the light of my life. we

had no clue we were carriers. if anybody could please write me, i

would appreciate it so much

Hi I have three daughters and two of them have CF. They have one delta F508

and a Rare mutation that is 1717-1G-7A. They tell us my girls are mild to

because they were not diagnosed until my oldest was 6 years old and my youngest

was

1. You can e-mail me anytime. Deb A

[Guest guest]

Hi,

Welcome! I don't know a lot about the R117H mutation but the delta F508 is the

most common there is. The way it has always been described to me is that some

people have what is characterized as " mild " CF and some people with the same

mutations have more severe forms of CF. The severity has to do with, I have

been told, more than just mutations. I am wondering if you were told that the

CF is mild because the sweat test number is on the low end?

Well, welcome anyway!

Mom of 5 with CF (diagnosed at 9 months) and one on the way

Visit http://groups.msn.com/TeamJane To learn about our family and some

basic CF stuff

new to this

hi everyone - i am new, i hope i am doing this right. i have a

barely 3 month old baby, , who was diagnosed with " mild " Cf -

she has the delta F508 and R117H mutation - does anyone else have

this? she tested 29 for the sweat test, is gaining weight and is

otherwise asymptomatic, so far. does anyone else have this mutation,

is it really mild? i am so scared, she is the light of my life. we

had no clue we were carriers. if anybody could please write me, i

would appreciate it so much.

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

The opinions and information exchanged on this list should IN NO WAY

be construed as medical advice.

PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS.

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

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

[Guest guest]

Welcome to our support group. Is your name Brynn? You are doing just fine. You

are very welcome here, we have people with all degrees of CF. My name is

(some people call me Bren!) and I have been around awhile. My daughter

with CF is 19. She was diagnosed at the age of 8 months. We just recently

found out her mutations, one is delta f 508 and the other is G116 G or something

close to that, it is very rare and I don't have the paper in front of me right

now. Her disease has been fairly mild as well, although she has had 13 sinus

surgeries and has been hospitalized enough! We recently found out she is

pancreatic sufficient after she took enzymes for about 18 years! (it seemed she

needed them when she was younger but as she has been grown she started getting

constipated all the time, which was due to the enzymes she didn't need). Anyway

this is a great place for new parents and although everything will probably seem

very confusing at first, please just ask any questions you have and we are all

very friendly and we do our best to help. I wish for you the best of health for

(cute name!) and hoping her CF stays " mild " . Oh and yes I have heard

from other people that that mutation does result in a milder form of the

disease.

welcome!

love,

M

mom of Nick age 21 nocf and age 19 wcf

[Guest guest]

is such a cute name. I hope your baby continues to have mild

cf. I worry about the doctor telling you this because it might lead

them to overlook symptoms when they appear. Zach has g551D and

K710x mutations. Both are more rare than the common Delta F508 so

theoretically he should have a mild case of cf, at least that is

what every pediatrician, gi doc, etc has tried to tell me. However,

Zach was born with a meconium ileus, is pancreatic insufficient and

has already cultured psuedomonas. Except for the pancreatic

insufficiency, Zach seems healthy. He never coughs or even has a

runny nose, but he has psuedomonas growing, so that is a concern for

us. Do not let my story scare you into thinking that this will

happen to . Every case of cf presents differently, even in

siblings. Just make sure that you take her to her cf clinic visits

and monitor her for signs of pancreatic insufficiency. Zach started

having yellow oil in his diapers. Also, ask them to do a throat

culture at each clinic visit. This way they can monitor her early

if anything grows.

Sara

> hi everyone - i am new, i hope i am doing this right. i have a

> barely 3 month old baby, , who was diagnosed with " mild " Cf -

> she has the delta F508 and R117H mutation - does anyone else have

> this? she tested 29 for the sweat test, is gaining weight and is

> otherwise asymptomatic, so far. does anyone else have this

mutation,

> is it really mild? i am so scared, she is the light of my life.

we

> had no clue we were carriers. if anybody could please write me, i

> would appreciate it so much.

[Guest guest]

Hey JT,

I want to tell you first welcome to the group and second that you are not

alone by far. There are alot i mean alot of people here with the disease

including me myself. I am a 28 y/o M out of NYC. I was in the same exact boat as

you, when I was 20 I was ready to start my life and go to college and start my

life and do everything I wanted to do and more but I was shot down pretty fast

when I found out that I have what I have. I have had this Disease for about 8

years now give or take a few but formally Diagnosed with this horrible disease

for about 4 years now but all the doctors knew what I had but they didnt beleive

me because im a young kid to them that couldnt possibly have this disease and I

was also listed as a drinker which isnt true at all I am not never have never

will be. It took them so much time to finally tell me what it was and is, I was

in the hospital for about 5 to 7 months out of the year when It first started so

i wasnt allowed to do anything because when I would start somehting and get into

it i would have to go to the hospital and i would be admitted for a few weeks

and it would ruin anything that i would be doing. I was in culinary Arts school

at the time, I loved it I did I loved it and i had to drop out and not finish

because of this disease. As time had progressed I found other doctors that I

dealth with some that were ok and then there were some that were just ridiculous

and accused me of drug seeking, I had this one GI doctor that was treating me

for about a year or little more and would admit me when i wanted to be and

needed to be and took care of me and tended to my needs and everything. Well one

day I called him and told him I was in alot of pain and i was going through

somehting and he said well we will stick you back in the hospital and shoot you

up with the drugs in a very rude and nasty tone. So i told him I didnt want or

need to be treated or spoken to like that and i stopped seeing him. I needed

some paperwork though from him and I got a copy from my chart and was going to

give it to another GI MD but i thought hey let me read this and make a copy just

incase and little did i Know that he was saying that I didnt have anytihng and

that it was all in my head and that I was a drug seeker and that is what my

problem was. When I read that i was not only mad but hurt because i put my time

and trust into this doctor and he acted like he was a great doc but when I

actually read his comments and the chart I was shocked. I have that problem now

too sometimes. I went to see another GI doc a little while ago to see and they

all tell me that My case is to advanced for them and there is nothing that they

can do for me. that sucks. So the GI DOC that i have now i have had him for

about 2 years now he is the one that wants to do proceedures on me and everytime

he does I get a flare up and end up in the hospital. The last flare up i had I

was at the hospital ER and he admitted me to the hospital but he seemed so like

you again why your fine. So this is a very very hard disease to deal with. My

suggestion to you is to get a Great not Good but a great GI doctor that Trusts

you and you trust him and also get an Excellent Pain Management Doctor out of

the same hospital if you can and have them work togethter to build a plan for

you. Also i heard you say that you are depressed well that is one of the things

as well Most of us here are Depressed about this disease and we come here and

talk with one another for support and comfort. I can honestly say that last

week i was so depressed with the whole thing and the pain and the way my wife

was upset with me and the diesease that i told her THAT I WAS WORTH MORE DEAD

THAN ALIVE. " and honestly at that point last week i was so depressed and in pain

and misserable with everything including my Job, they have been writing me up

everyday that im out because of this disease. It just wasnt a good time even

with Christmas and all. I was thinking of just ending it all and thats it but

she came into the room and started crying and said please dont say that and I

told her thats how i felt and all. Well off the point a little but you should

also find someone to talk to because you cant do it alone. You need a strong

support group with this disease and like I said about the Doctors. But also

remember not all doctors are there for you so make sure you get a good one. I

know alot about my disease since i have had it for about 8 years now so if you

ever want to talk about anything feel free and drop me an email

Shadoww576@.... They other thing i wanted to tell you is that I wanted to

joint he Marines as well and the Army but because of my disease I cant. I lied

to myself the whole time i would say im ok im ok and then just last year i came

to gripts with it that im not ok and that i cant do it and i let it go. The

tests will not show up on any MEPS examinations that they do so dont worry about

that. and ofcourse you cant tell them anyting either. Well I have said enough

for now but if you want to talk or anything feel free to email me ok. And by the

way welcome to the group this is an excellent group and alot of help here.

Gio

[Guest guest]

Hi Jodi! Thank you for emailing me! I am going through all of the emails and

am overwhelmed at the support RSS parents show! A little more about Crosby:

After he was born at the local hospital on Hilton Head Island, SC he was

transferred to the level two special care nursery at Candler hospital in

Savannah, Ga. He was originally sent for Jaundice but when he got there he was

treated for typical IUGR problems such as hypoglycemia, hypocalcemia,

polycythemia, and low body temp. We are very fortunate in that he only had to

stay a total of 10 days. Even the nurses were stunned. I can not imagine what

it must have been like for you to have in the hospital for 3 months! We

were given steriods at 28 weeks to develop his lungs which I assume is common in

IUGR cases if they are known about before birth. After coming home he ate often

but not much at a time. His feeding amounts did increase however, and he gained

weight, followed his own growth curve but remains below the 3rd

percentile. He turns 1 on Tuesday and weighs about 14 pounds. His head is big

and his body is skinny. My 9 year old cousin says Crosby is going to be really

smart because he has such a big brain! I'm going to attach a picture taken at 5

months. He has never been tube fed (except for NG tube in the hospital as a

newborn), and is now eating O.K. in my opinion, but I could be wrong. He will

eat pretty much everything I put in front of him, but only actually gets small

amounts when feeding himself. If I feed him he eats the equivallent of two size

2 baby food jars. Do all RSS children have feeding problems? On another note,

I didn't mention this in my first email, but I also have a daughter who was IUGR

(unknown during preganacy). She was born at 36 weeks as well and weighed 3lbs.

14 oz. and was 16 1/2 inches long. She is SGA, has a prominent forehead,

slightly low set ears, and an incurving fifth finger. I've never thought about

her appearance as odd, but now researching

RSS makes me think that she could also have it. Is this possible? Everything

I read says it's very rare and rarely reoccurs within families. Also, a newborn

picture of an RSS baby that I saw on the net could be my daughter's twin. She

weighs 22 lbs at 28 months. Well, I could ramble on about my kids, but I will

take a rest for now. Thanks for your reply and time so much!

Jodi wrote: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.

>

>

[Guest guest]

Oops! Forgot to attach that picture. Here it is. I decided to send one of the

whole family. By the way, I may be coming to the convention. I am quite

interested in meeting Dr. H. and other families. Thanks again!

Jodi wrote: 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.

>

>

[Guest guest]

Hi ,

Welcome to the group! I'm sure you've found out what a great

group this is already. Everyone here is definatly my extended

family. My youngest daughter, Olivia, has RSS. She was born at 29

weeks weighing 1 lb, 11oz. After only an 8 week hospital stay she

came home at 3lb 6 oz.

We live in Alberta, Canada and were able to attend the convention

last summer, I truly hope you can make it this year, I'm going to be

there again!!

Hope to chat with you soon!

P.S. We can't attach photos here because of virus threats but you

can make Crosby a photo album and add pics there.

Leah, mom to 10 and Olivia 5 years, 22lbs, 35 " , RSS, OI

> 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.

>

>

[Guest guest]

I'm amazed at how much everyone's stories about their children on this

particular post sound so much like my daughter Aubrey's begining and even know.

She was born at 27 wks weighing 553grams (1#3oz) and stayed in the NICU for 14

weeks. We have had some feeding/weight issues among several other health issues.

However, I am thankful it was not as bad as it could have been I guess. Right

now Aubrey is 39 months and weighs 21 pounds. She actually did make it to the 22

mark, but unfortunately got sick and is just now starting to head back up in

weight. Also she is 32 inches tall after 6 months of growth hormone therapy.

All your stories were so similar my jaw dropped. Just thought I'd share a

little. Normally don't post too awful much, but this post in particular really

stood out to me.

Hugs,

Tonya

matthew barrett wrote:

Hi Jodi! Thank you for emailing me! I am going through all of the emails and

am overwhelmed at the support RSS parents show! A little more about Crosby:

After he was born at the local hospital on Hilton Head Island, SC he was

transferred to the level two special care nursery at Candler hospital in

Savannah, Ga. He was originally sent for Jaundice but when he got there he was

treated for typical IUGR problems such as hypoglycemia, hypocalcemia,

polycythemia, and low body temp. We are very fortunate in that he only had to

stay a total of 10 days. Even the nurses were stunned. I can not imagine what

it must have been like for you to have in the hospital for 3 months! We

were given steriods at 28 weeks to develop his lungs which I assume is common in

IUGR cases if they are known about before birth. After coming home he ate often

but not much at a time. His feeding amounts did increase however, and he gained

weight, followed his own growth curve but remains below the 3rd

percentile. He turns 1 on Tuesday and weighs about 14 pounds. His head is big

and his body is skinny. My 9 year old cousin says Crosby is going to be really

smart because he has such a big brain! I'm going to attach a picture taken at 5

months. He has never been tube fed (except for NG tube in the hospital as a

newborn), and is now eating O.K. in my opinion, but I could be wrong. He will

eat pretty much everything I put in front of him, but only actually gets small

amounts when feeding himself. If I feed him he eats the equivallent of two size

2 baby food jars. Do all RSS children have feeding problems? On another note,

I didn't mention this in my first email, but I also have a daughter who was IUGR

(unknown during preganacy). She was born at 36 weeks as well and weighed 3lbs.

14 oz. and was 16 1/2 inches long. She is SGA, has a prominent forehead,

slightly low set ears, and an incurving fifth finger. I've never thought about

her appearance as odd, but now researching

RSS makes me think that she could also have it. Is this possible? Everything I

read says it's very rare and rarely reoccurs within families. Also, a newborn

picture of an RSS baby that I saw on the net could be my daughter's twin. She

weighs 22 lbs at 28 months. Well, I could ramble on about my kids, but I will

take a rest for now. Thanks for your reply and time so much!

Jodi wrote: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.

>

>

[Guest guest]

hi shannon!!

welcome to our great big family!!! you will find alot of support from

here!! did you check out the info for the convention that magic is

having in july in chicago? it is such a great experience!! my son is

4yrs old, he is currently on periactin and ght. he is 27.6lbs and

95.4cm. his name is christopher. hope to see you at convention!!

jodie c (one of 3 jodi's on the list)

[Guest guest]

Hi Conny,

I noticed you hadn't been around. I just recently got back on

myself. So glad to hear from you.

is going to be 3 on the 23rd!!! I can't believe it. He is

doing alright. He got ear tubes placed in January and hasn't had

another infection since. His lungs are still the same. They did

another lung function test on him as they were hoping as he

got " bigger " and gained weight his chest wall would grow allowing for

his lungs to expand normally. well, that just isn't the case.

Things are still the exact same as they were. He has gotten bigger,

but his chest wall is staying the same. So, he still breaths very

quickly and of course burns calories a lot faster.

He is up to 22 lbs. 6 oz and is 32 " tall. I am anxious to see what

Dr. H says about him this year at the Convention, as we are pretty

sure we will be joining the other GHers on this listserve. LOL. The

one thing about I have noticed ( and I don't know if any of

you have noticed the same thing) but 's hands and feet are not

growing. They are still infant sized. I am a little concerned about

that, as I don't know what that means, but Jodie Cals told me that GH

seemed to make 's feet grow quickly. So maybe theere will

be more benefit to GH than we know at this point for . I am

also wondering if it will help with the chest wall or anything lung

related. I don't know if ANdrew is too chubby at this point, or not

chubby enough! LOL. I have plotted him between the 10 and 25% on

the weight/height chart, but I still don't know if he is getting

enough. I certainly don't want to make him too fat. Dr. H thought

he was too chubby last year. So, I have so many questions myself. I

just know that he is doing pretty well and has recently gotten over

his second bout with walking pnuemonia. Still doing Pulmicort twice

a day though per Pulmonary orders, and Xopenex as needed. Funny

thing is, when we do Pulmicort, 's spitting up ceases. So, I

like keeping him on this! ) Any one else notice this??? Dr.'s

here are very compelled by this! ) .....he never goes by

the rules! Hee, hee. Always stirring something up! )

How is doing? I would love to hear about him and you.

Take care,

Jodi R.

> > > 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.

> > >

> > >

[Guest guest]

,

I am so glad to hear back from you. That is fuuny about what your

cousin said about the big brain. The funny thing is, my husband

asked if was going to be a genius due to his large head size.

Now, that sounds very funny now, but we didn't know what 's

diagnosis was at the time. He was just very sick and fragile, we

weren't sure he wasn't going to snap out of some sort of sickness.

But, now, looking back, it is funny. He is very smart thought. He

scores above his age for cognitive skills. )

It sounds like Crosby eats pretty well for an RSS child. Some of

them eat well, while others end up needing tubes. I guess everyone

on here would just tell you to add some higher calorie things to

whatever it is that he does eat. It was suggested to us through

's GI specialist to add butter to stuff, and even give him corn

oil through his tube. Unfortunately, he couldn't tolerate that

because it was heavy on his belly, and it also clogged up his tube on

more than once. (

You know, I have to tell you. We have often wondered about our

oldest son, . He is 5 1/2 and weighs 38 lbs. I don't really

know exactly how tall he is. But, there are 4 year old girls bigger

than him. Anyway, he was born on time weighing 7 lbs. 3 oz and was

21 " long. But, he had trouble breathing right after birth and when

the Dr. looked at him they told me there were some things that just

weren't adding up to what his gestation age should have been. They

said he appeared to be 3 weeks premature??? They said he hadn't

developed to a full term baby and his skin was still very

tranparent. He was always a very bad eater. I breastfed him until

he was 17 months old he he was breastfeeding ALL the time. I was up

constantly with him. He was a grazer and the trend lives on now at 5

1/2. He doesn't want to eat and doesn't like to eat. He would eat

bologna and hot dogs cut up every meal if he could. It takes him

FOREVER to eat. He has been at the dinner table an hour so many

times it's not even funny. also has the cafe au lait spots,

the incurved pinkies, and no appetite like I said. These are all

characteristics of RSS. He would have to be a VERY mild case, and

his birth weight doesn't add up to RSS, but I swear he carries the

RSS gene or something. We fight all the time about food with him.

So, you are not alone in your suspisions at all. I know they have

said that it doesn't run in families, but I think there must be a

carrier gene or something involved here. I was born at 5 lbs. 5 oz.

on time and was very skinny and looks like a larger sized head in

pictures. Also, I have the cafe au lait spot and incurved

pinkies!!!! Hmmmmmm.

Email me at rjrollison@ adelphia.net, but no space after the @.

Jodi R.

> > 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.

> >

> >

[Guest guest]

Hi Amelietrice,

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

probably not all at once but we will do our best. If don't get an

answer, keep asking. Some one will respond.

First, let me say this. If your son has no other medical problem

other than RSS, he will be fine. If you do nothing, he will be

small, short but probably otherwise happy and healthy.

Since each child develops differently, I can't tell you what to

expect excatly. My son was delayed. He didn't stand until he was

18 months. He didn't walk or talk until he was almost 2. We

taught him sign language. He knew almost 200 signs by 2 when

he started talking. Somtimes, I wish he would go back to

signing, if you know what I mean.

As for what you can do right now, it depends. Many RSS kids

have a very low appetite or are quickly satisfied. You know, one

or 2 mouthfuls of food and thay are done. So you can try and

make every calorie count. For my son, nothing goes in him

unless it has calories. We added things to his food like a little oil

or butter. Many foods got cheese. He ate scrambled eggs made

with real cream and butter. Some parents put cream cheese on

many foods. In otherr words, everything you should avoid

because of the high calories, he should get. If he likes yogurt, try

Gogurts, they are very high in calories. You can put this in a dish

and add a little kayro syrup. I hope this gives you a few ideas.

Depending on how bad his appetite, he may need a feeding

tube. Many kids do. Usually, when a child gets a feeding tube

many parents feel greatly relieved because they can now be

assured their child is getting enough to eat. Others, like my son

have not needed a feeding tube but we have gotten close to one

on several occasions. For us, periactin (an anithistamine) used

as an appetie stimulant was enough. It has worked well but not

every child responds to it.

Later, when he is older than 2 you may want to think about

growth hormone. For us it was an easy decision, for others it is

harder and some do not even consider using growth hormone. It

all depends on your beliefs, and your sons specific medical

issues at the time. For my son the doctor took a bone age x-ray.

That showed in a 14 month period of time his bone age

advanced 3 months and at age 5, he had the bone age of an 18

month old. Since he was entering school, the doctor said it was

necessary or he would not be able to do the tasks required of

him in school.

Well, this is getting to be quite a lot. I'll stop here. Please feel free

to ask anything. We will gladly answer your questions.

I hope this helps.

Ken M

> 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?

[Guest guest]

Hello amelietrice, welcome to the group! As you may already know this is a great

support group. Is he your only son? My son is 14 mos >13lbs, but i'll know

his definite weight/height next week at his 15 month appt.. he's developing

pretty normal (small of course) and his motor skills are normal and always have

been, walked at 13 mos, first word (bird) at 10 mos, and now he knows probably a

total of 5 words/names...Well im sure your questions will be answered, and i

hope things get better for you....you guys will do fine! Cant wait to see

pictures of your son.....Hopefully we'll see you at the convention! Take Care!

mom to RSS 14 mos

trice wrote:

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?

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

[Guest guest]

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)

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

[Guest guest]

hi amelietrice,

first welcome to our big family!! my son is 4yrs old rss middle

child. he eats on his own, no feeding tube. he made all his

milestones on time and attends preschool 5x a week for 2 1/2hrs. he

does receive some slight OT at school, but so does my 7yrold nonrss

child!! christopher has always grown on his own curve!! he was

born at 38weeks via a planned c-section. i had a previous c-section

with my now 7yrold son, he was 9lbs 4oz & 22 1/2 " . they thought

christopher was going to be atleast 8 1/2lbs, wrong!! he was 5lbs

10oz and 15 1/2 " !! he was a little jaundice and was under the temp

lamp only the first day. they had to give him a bottle of sugar

water, but they had to do that with my first son as well. i breast

fed him. he went home on time and was losing weight, got down to

5lbs 1oz by his 1 week check up. had to breast fed him every 2hrs,

pump and try to get what i could in him using a bottle with a premie

nipple. had to take him every 3 days to be weighed for the first 2

months. he gained back his weight. but he always grew on his own

curve. at 2 months they picked up on his assmentry(left side was

1/2 " now only 1cm) that when they thought rss was possible. he had

the upd7 test which came back neg. but not all rss kids have a

positive upd7. we took him to see dr harbison in nyc for a 2nd

opinoin. she put him on periactin to help with his appitiete so he

could have catch up growth. and it worked!! in 9months he gained

over 3lbs and grew over 2 1/2 " !! he is now on the periactin and

ght. the ght will not only help him grow in height but helps with

their muscle tone as well. christopher has never had a problem with

his blood sugars but i make sure he eats something every 2 hrs

atleast.

i know it is over whelming right now, just take a deep breath!!

christopher is a very loving, smart child!! and he plays and runs

around just like any other child!! check out the magic foundations

web site at www.magicfoundation.org they are a great non-profit org

for adults and families of children with growth disorders. they

have a convention every july in chicago which is just AWESOME!!

feel free to email me at anytime at jlcals2003@ yahoo.com (no space

after @) godd luck!! ((HUGS))

jodie c

(nicholas-7 nonrss, christopher-4 rss 27lbs 6 oz 94.5cm periactin

5.2cc 2x's a day, ght genotropin .6, assmentry(left side 1cm), ADHD

& OCD possible, athon-23months nonrss)

> 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?

[Guest guest]

Hi Amelietrice! My name is . I joined this group very

recently(less than a week ago) and already they have answered a lot

of my questions. Your pregnancy sounds a lot like my pregnancy with

my son Crosby. I too suspect that he may have RSS, though we do not

have a diagnosis. I haven't even seen an endo. yet, but he is SGA,

and had a pregnancy complicated by IUGR. In addition to that he has

many other RSS features. I understand your feelings. As it is, I

couldn't get an appointment with an endo. until August. However, I

am coming to convention with my son and hopefully after seeing Dr. H.

we will have some answers. Is there any chance that you could come

to convention? Everyone has really encouraged me to attend. Your

feelings are not at all selfish. All of the information is

overwhelming. My son seems very similar to yours. He just turned 1

yr (yesterday!) and he also weighs 14 lbs. To answer your question,

about growth, yes. Other children do experience growth delay without

having RSS. It could simply come from them being SGA, and IUGR

inutero, like my daughter Amelia. I didn't know about the IUGR until

after she was born at 36 weeks (spontaneous labor) weighing 3lbs. 14

oz. She is still very tiny. Good luck getting answers to your

questions. Post anytime you need to ask questions or vent!

> 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?

[Guest guest]

Welcome to the group. I understand all of your emotions. I wondered the same

thing with my daughter " Does she have RSS/SGA - or will she simply GROW out of

this and grow to be a normal height? " I have now accepted (or at least I think

I have) the fact that she will be small - but I know as parents we try to

encourage our children to engage in sports/activities that " fit " - obviously I

am not going to push my child into basketball - but perhaps gymnastics.

My daughter was born full term - 4# 10oz; 18 " . She also hit every milestone on

time - walking at 13 months. She is on the appetite stimulant - this has made a

big difference in her eating. She also is on Zantac for reflux. I know this

all seems overwhelming - but I also know that this group is wonderful and you

will get so much support and advice. If you can make it to the covention that

would be great!

Jane, mom to katie - 20 months aprox. 18#, 29 " (I really need to get her in for

a weight check and 2 boys (5 and 3)

[Guest guest]

Hi, I would for sure put your daughter in gymnastics. it will help to make her

feel normal and like she belongs to something. it will also make her stronger. I

did gymnastics for 10 years and it made a huge difference in my confidence. = )

good luck.

*leah*

" loschy@... " wrote:

Welcome to the group. I understand all of your emotions. I wondered the same

thing with my daughter " Does she have RSS/SGA - or will she simply GROW out of

this and grow to be a normal height? " I have now accepted (or at least I think

I have) the fact that she will be small - but I know as parents we try to

encourage our children to engage in sports/activities that " fit " - obviously I

am not going to push my child into basketball - but perhaps gymnastics.

My daughter was born full term - 4# 10oz; 18 " . She also hit every milestone on

time - walking at 13 months. She is on the appetite stimulant - this has made a

big difference in her eating. She also is on Zantac for reflux. I know this

all seems overwhelming - but I also know that this group is wonderful and you

will get so much support and advice. If you can make it to the covention that

would be great!

Jane, mom to katie - 20 months aprox. 18#, 29 " (I really need to get her in for

a weight check and 2 boys (5 and 3)

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

[Guest guest]

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)

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