hello everyone

[Guest guest]

Welcome !!

You have found a wonderful resource!!

Mimi

Mom to Isaac (almost 15 mos, RSS, Hypothyroidism- weighed 14 lbs and

was 25 5/8 " at 14 mos)

Baby on the way

[Guest guest]

I'm so glad that you have joined the group. I'm sure everyone will be happy

to help you with the many questions that you must have at this time.

le, mom to Datreon, RSS, 19months, 17lb 2oz, 27.5in

[Guest guest]

hi michelle!!

welcome to this great " family " !! have you checked out the Magic

Foundation yet www.magicfoundation.org they are a great non-profit

org. for families and persons that have growth disorders!! they

have an annual convention in july in chicago where you can get loads

of info on rss, a free consult with dr harbison (the US expert in

RSS), and meet other families and adults with rss. my son

christopher is 4yrs. he was also full term planned c-section at

38weeks because of a previous c-section with my first son who was

9lbs 4oz and 22 1/2 " . christopher came into the world at 5lbs 10oz

and 18 1/2 " (i was told to expect an 8 1/2lb baby!!! christopher

was dx at 2months when they found he had assmentry of his left side

(his left leg was 1/2 " shorter and his left arm and leg were thinner

than the right and his left foot and hand are smaller). he doesnt

have any major medical issues. he is in preschool 5x a week where

he receives some slight OT. he is a bright and very active boy. he

was on time with all his milestones except his teeth which he didnt

get his first one until he was 11months. he is currently on

periactin (which is an appitite stimulant) and Growth Hormone

therapy. he is 36 1/4 " tall and weighs 27lbs 5oz when last measured

and weighed in jan. feel free to email me anytime at jlcals2003@

yahoo.com (no space after @) once again welcome!!!

jodie c. (one of 4 jodis on the list)

(nicholas-7 nonrss, christopher-4 rss 27lbs 5oz 36 1/4 " periactin

4.5, ght genotropin .5, assmentry (left side 1cm), ADHD and OCD

possible, johnathon-21 months nonrss)

[Guest guest]

Hi ,

De ja vu for me - last year I was joining the group with my 14 month

old daughter! So he is probably Feb right? My first suggestion

would be to join the MAGIC Foundation (www.magicfoundation.org), the

second to come to the convention in Chicago in July! They offer

scholarships if you cannot afford it. Curious as to why Tijuana -

maquiladora mgmt? Anyway, lots of suggestions to be found here! At

that age, high fat yogurt and cheese were o ur saviors for my

daughter!

, mom to , 5 and Emerence 2, RSS/SGA 20lb 11 oz, 31 " and

headed for her 3rd ear tube surgery....

>

>

> Hello everyone! My name is and i am new to this support

> group. Here's a quick run down of my story. I am 29 years old and i

> have one son (ryan) who is 14 months old. I carried him full term

> and he was born at 5lbs 8oz, 18 inches long. He didn't/doesn't have

> any major health problems. His pediatrician at birth was worried

> about his weight after he went in for his first few appointments

and

> did not gain weight. He ordered blood test to see how his kidneys

> functioned. They were normal. We then moved to Tijuana, Mexico and

> the first week we were there he had the flu ( was about 8

mos).

> We took him to a well known Dr in Tijuana, and it was there were he

> brought up the fact that he might have RSS. We wanted to make sure

> so we then took him to a pediatrician in Southern California, to

get

> a second opinion, We had no idea what RSS was and wanted to know

ALL

> the details of the genetic syndrome. Our next stop was the

> Geneticist, who confirmed did indeed have RSS. He didn't

really

> get too detailed on RSS (which i thought he could have been more

> informative since we were first time parents, let alone with a son

> who has RSS). So i decided to join this support group in hope to

> compare notes with other parents who are/have been in the same

> situation. now weighs 12lbs, and is 24 inches long.

> Thank you so much for your time (as i will probably have more

> questions to come ;o)...)

> , mother of

[Guest guest]

Welcome to the group. My name is jane. I have a daughter that is 19 months. I

was very concerned about my daughter ; especially as an infant - now as a

toddler she is doing great. We have been fortunate that she is an eater -

although she has good and bad days. walked at 13 months. I can tell you

that this support group has been tremendous with information and overall

support. I remember when I first found this group I checked it like 5X a day to

learn whatever I could. I hope you can find the answers to your questions as

well! Jane, mom to katie 19 months, 17lb, 28 " , periactin, zantac. Gavin 5 yrs,

Aidan 2 yrs.

[Guest guest]

Hi Jane!

Sounds like is doing great! I think she and Emerence are so

similar! Will you make it down from ND this year? We arrive on

Thurs this year!

, mom to 5 and Emerence, 2

-- In RSS-Support , " loschy@n... " <LOSCHY@N...> wrote:

>

> Welcome to the group. My name is jane. I have a daughter that is

19 months. I was very concerned about my daughter ; especially

as an infant - now as a toddler she is doing great. We have been

fortunate that she is an eater - although she has good and bad days.

walked at 13 months. I can tell you that this support group

has been tremendous with information and overall support. I remember

when I first found this group I checked it like 5X a day to learn

whatever I could. I hope you can find the answers to your questions

as well! Jane, mom to katie 19 months, 17lb, 28 " , periactin,

zantac. Gavin 5 yrs, Aidan 2 yrs.

[Guest guest]

hi michelle!!

try looking into orbitz for your airline tickets, i got mine through

there and for all 6 of us to fly round trip from philly to chicago wwas

only $956!! everyone else wanted almost $2000!! i think several

others have used it as well for there tickets.

jodie c

ps where are you from?

[Guest guest]

wellcome michelle,

you have come to great place with very helpful people.

cara mom to jacob

amv619 wrote:

Hello everyone! My name is and i am new to this support

group. Here's a quick run down of my story. I am 29 years old and i

have one son (ryan) who is 14 months old. I carried him full term

and he was born at 5lbs 8oz, 18 inches long. He didn't/doesn't have

any major health problems. His pediatrician at birth was worried

about his weight after he went in for his first few appointments and

did not gain weight. He ordered blood test to see how his kidneys

functioned. They were normal. We then moved to Tijuana, Mexico and

the first week we were there he had the flu ( was about 8 mos).

We took him to a well known Dr in Tijuana, and it was there were he

brought up the fact that he might have RSS. We wanted to make sure

so we then took him to a pediatrician in Southern California, to get

a second opinion, We had no idea what RSS was and wanted to know ALL

the details of the genetic syndrome. Our next stop was the

Geneticist, who confirmed did indeed have RSS. He didn't really

get too detailed on RSS (which i thought he could have been more

informative since we were first time parents, let alone with a son

who has RSS). So i decided to join this support group in hope to

compare notes with other parents who are/have been in the same

situation. now weighs 12lbs, and is 24 inches long.

Thank you so much for your time (as i will probably have more

questions to come ;o)...)

, mother of

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

[Guest guest]

Thank you ,

we're living in Tijuana for now because my husbands job moved him to San Diego.

Since his parents live here and we pay mortgage for a house we own in Las Vegas

(which we're trying to sell), it helps financially so we're not paying mortgage

and rent at the same time. What high in fat yogurt did you buy? has a hard

time with chunky foods, so i do give him yogurt, liquid yogurt/smoothies, and

mash other foods he likes to eat so he doesn't gag.

mother to rss 14mos

wrote:

Hi ,

De ja vu for me - last year I was joining the group with my 14 month

old daughter! So he is probably Feb right? My first suggestion

would be to join the MAGIC Foundation (www.magicfoundation.org), the

second to come to the convention in Chicago in July! They offer

scholarships if you cannot afford it. Curious as to why Tijuana -

maquiladora mgmt? Anyway, lots of suggestions to be found here! At

that age, high fat yogurt and cheese were o ur saviors for my

daughter!

, mom to , 5 and Emerence 2, RSS/SGA 20lb 11 oz, 31 " and

headed for her 3rd ear tube surgery....

>

>

> Hello everyone! My name is and i am new to this support

> group. Here's a quick run down of my story. I am 29 years old and i

> have one son (ryan) who is 14 months old. I carried him full term

> and he was born at 5lbs 8oz, 18 inches long. He didn't/doesn't have

> any major health problems. His pediatrician at birth was worried

> about his weight after he went in for his first few appointments

and

> did not gain weight. He ordered blood test to see how his kidneys

> functioned. They were normal. We then moved to Tijuana, Mexico and

> the first week we were there he had the flu ( was about 8

mos).

> We took him to a well known Dr in Tijuana, and it was there were he

> brought up the fact that he might have RSS. We wanted to make sure

> so we then took him to a pediatrician in Southern California, to

get

> a second opinion, We had no idea what RSS was and wanted to know

ALL

> the details of the genetic syndrome. Our next stop was the

> Geneticist, who confirmed did indeed have RSS. He didn't

really

> get too detailed on RSS (which i thought he could have been more

> informative since we were first time parents, let alone with a son

> who has RSS). So i decided to join this support group in hope to

> compare notes with other parents who are/have been in the same

> situation. now weighs 12lbs, and is 24 inches long.

> Thank you so much for your time (as i will probably have more

> questions to come ;o)...)

> , mother of

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

[Guest guest]

Thank you . I live in Arkansas and the Genetics doctor was

the one that suspects RSS. The endo agrees with this, but is wanting

us to switch Genetics doctors so that she can be tested. I have so

many questions that I don't even know where to start.

The endo is wanting her to start growth hormones now since she is

below the 3rd percentile. She is following the growth curve, just

one of her own, but it does seem to be consistent. Me and her father

are worried about starting the growth hormones because we know very

little about the side effects and that sort of thing. I don't want

to start her on it just yet because they do not have any clue right

now why she is not growing. I would like to find out if everyone

else's children's test came out to be normal when the growth hormone

was tested. Hailey's were normal, but she is still not growing. Also

the test they are going to be using on Hailey for RSS only picks up

10% of the children that have it. Were your tests more accurate? I

don't really know where to turn since I have very limited money and

only her insurance to rely on. I have more questions, but I will ask

them later on.

M

( 9 in Heaven), 6 and Hailey 3

> Welcome

>

> As you can see you foiund the best suppoprt group

> there is to find. Make sure you get in touch with the

> Magic Foundation. 1-800-3MAGIC3.

>

> Where do you live? What does the endo have to say

> about an RSS diagnosis or have you just discovered

> more on RSS to think that it could possibly be that?

>

>

> B

> 5 and Kelli 2 3/4

[Guest guest]

Hi ,

There is no real test for RSS. In 10% of cases the child has

inherited two copies of chrosome 7 from one parent, but in 90% of

cases it is a clinical diagnosis.

As for growth hormones, almost all RSS children will test as having

a " normal " amount of gh. However, " our " kids just seem to need more

to grow, more calories, more gh.

Our son is 5. He is 32 pounds and 38 1/2 inches. He has been

on gh for 15 months now. He grew 4 inches in the first year on gh.

Prior to that, he was only growing about 2 inches per year.

There is a doctor in NY, Dr. Harbison who sees many RSS patients.

The Magic Foundation has an annual convention in Chicago in July.

If you can get there, you would be able to see Dr H free of charge.

You should contact the Magic Foundation as soon as possible. There

are usually scholarships available.

Judith, Steve, (RSS) and (non RSS) 5 year old twins

[Guest guest]

Hi ,

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

some guidance in your efforst to care for your daughter.

I have little knowledge about some of the questions you asked, so I

will not attempt to answer those.

I can tell you about growth hormone and RSS. Most RSS kids test

normal or low normal for growth hormone levels. My son who is now 8,

tested in the low normal range for growth hormone levels. However,

even with that his doctor was reluctant to put him on growth hormone.

She decided he needed growth hormone when she did a bone age x-ray

and saw that his chronlogical age was 5 but he had the bone age of an

18 month old and that his bone age had advanced 4 months in the

preceding 14 months. Since he was about to start school, she

recommended growth hormone. Like you we were concerned but did some

checking and found that growth hormone that is used is a synthetic

version of the growth hormone your body produces naturally. There are

few side affects. My son has not shown any of them. He has been on

growth hormone for over 3 years now and is growing quickly.

They don't use natural growth hormone any more because the natural

hormone is very difficult to purify properly.

Has your doctor suggested cyproheptadine (Periactin)? It is an

antihistamine used for treating allergies. It is used in RSS kids

(and others) as an appetite stimulant. This may increase your

daughters appetite somewhat and help her to gain some weight.

I am sure others will have more suggestions for you.

I hope this helps.

Ken M

> Hi, I joined this group a few weeks ago and was going to read the

> posts before posting to the group. I decided to go ahead and post

> since there are so many post. I am trying to learn about RSS

because

> altough my child has not been tested for this, she shows many of

the

> signs of RSS.

>

> Hailey is 3 years old and weighs 20 lbs. She was born 12 weeks

early

> and weighed 1 lb 12 and 1/2 ozs. She was small for her gestational

> age and grew very slowly while in the NICU. She stayed in the NICU

> for 68 days until she reached her " going home " weight of 4 lbs.

>

> While in the NICU they tested her for everything they could think

of

> (not RSS, but everything else that could go wrong). They even

tested

> my breastmilk to make sure it had enough calories. Most breastmilk

> is 20 cal. and mine was 28 so they figured that was surely not the

> problem.

>

> All this time I thought that I just had a normal preemie and that

> everything would work out. They kept telling me that most preemies

> catch up by the time they turn two.

>

> We have had all kinds of specialists in the mean time. We had to go

> to a Retina specialist because she had ROP and that finally cured

on

> its own so that was one that we could mark off of our list.

>

> The second one came when she was admitted to the hospital for

> pneumonia. The children's hospital that she was admitted to wanted

> to get her seen by a genetics doctor while she was there because of

> her size. This doctor checked a few things and done a MRI because

of

> her hermangyomia (not sure on the spelling)on her back, so they

> could be sure that it was not interferring with her spinal cord.

She

> recommended eventually that we send off her blood work to the

Mircle

> Foundation to check for RSS. The only thing is that they do not

> accept her insurance and we can not afford the test.

>

> Third came endo. We have been seeing her every six months. She is

> wanting to put Hailey on GH, but we are very worried about the side

> affects and everything else that could go on and I really don't

want

> her to have to have a shot every single day. I feel like she has

> been stuck enough. On the other hand I want to give them to her

> because I want to do everything possible to help her. I just don't

> feel it is appropriate to give her the shot when we don't really

> know why she is not growing and her normal GHs are fine.

>

> Fourth came the gastro. For the first 13 months of life, Hailey had

> severe dirreaha and then it went straight to constapation. She has

> had the latter every since. Now she is on Lactoluse and has been on

> it every since we started going to him. He wants to eventually wean

> her off of it, but probably won't for a while yet.

>

> With the last hospital stay (pneumonia again) they are suggesting

> sending her to an allergy specialist. Hailey has asthma and seems

> like everything sets it off. We are trying to keep her from getting

> sick.

>

> I don't know if any of you are having all of these problems, but I

> just don't know what to do. No matter how bad I wantted to, I could

> not get a job because she stays sick so much and has to go to so

> many specialist. I am about ready to throw up my hands and say I

> quit. I know I can't because Hailey needs me so bad, but I am so

> frustrated. I know this is long so I will post later. If anyone has

> any suggestions on this please let me know.

>

>

>

[Guest guest]

Hi ,

Well, rest assured, you have come to the right place for support. We

have all been where you are now. Some of us are still there! But,

all of these people are great and very supportive and will answer

your questions. Someone is bound to have an answer for you, or

advice anyway.

I have a 3 year old son, , who has RSS. He was diagnosed at 17

months by Dr. Harbison, the RSS expert out of New York City. Prior

to this, no one knew what was wrong with . He was born at 34

weeks weighing 2 lbs. 12 1/2 oz. and was 14 1/4 " long. He had

problems right after birth and was on all the bells and whistles. He

had an NG tube placed through his nose in order to feed him. He was

so small and underdeveloped that he couldn't suck from even a preemie

nipple. He remained in the hospital until the day before his 3 month

birthday. He was discharged at 5 lbs. 3 oz. Despite the steriod

shots I got before he was born, his lungs were very sick. He was ona

ventilator for a week and then went to a cPap. He was on oxygen up

until 2 and a half months old. And there were times he had to go

back on. We tried to feed him orally. I was pumping my breast milk

for him and tried to get him to breast feed, but to no avail. He

would turn blue and choke. So, I continued to pump milk for 15

months. Then, the doctors were discouraging me from continuing the

breast milk because they were afraid my milk didn't have enough

calories in it, but unlike your poeple, mine were too lazy to test

it. I was VERY reluctant to give it up because it seemsed like he

was tolerating that the best. He had reflux issues and still does.

Spits up a good bit. Anyway, they didn't know what was wrong with

him, like I said, and RSS only came up when he was 10 months old.

They did the UPD 7 test that you are talking about, but it was normal

of course, so they dropped the ball there. It wasn't unitl he was 14

months old that we saw a Metabolic specialist who had also seen

another little boy from this listserve (). He said that this

little boy had RSS and really looked like he had it too. That

is how I got in touch with Dr. H because he got the Info. from

's Grandma for me to call Dr. H.

was very small. When he saw Dr. H at 17 months old, he

weighed 10 lbs. 10 oz. She diagnosed him right away with a severe

case of RSS. After seeing her, dramatically started getting

better. She changed his feeds and his feeding schedule and he

started to become much stronger and gained a huge amount of weight

quickly! So, if you are ever in doubt, you should see her. She has

helped so many of us on here and she has been dealing with RSS kids

for YEARS! Her research goes back so far.

Anyway, we are planning on starting on GH once she gives us

the okay. It seems to be very safe and natural. I haven't heard too

many people that have had problems with it. But, it is a personal

choice for everyone. We just feel that with the severeity of

's RSS and all, that he would benefit form it greatly.

I understand your frustration and about not being able to work. I am

in the same situation here, as I refuse to put him in daycare and

expose him to all the germs, plus since he has a feeding tube, there

aren't many people who would ba e able to take care of him. You are

doing the best you can do. Just take it easy and keep coming on here

for support. Like I said, we know what you are going through.

has many more issues than I can go into, as this post is

already long, but a lot of us deal with a lot of docotrs and

different issues than a " normal " child does. We all have the

rigorous docotrs/specialists schedules. And you are right, Hailey

does need you, and she needs you to be strong. Don't let this get

you down. Once you start reading here more, you will see all the

advice and support we give each other. It is like one big family.

And, if you can get a hold of Dayna and talk to her about a

scholarship to the MAGIC Convention in Chicago in July, you really

should go. You will not be disappointed or sorry you went. Plus,

Dr. H would see Hailey if you would want her too. She could probably

tell you if she thinks she has RSS.

Jodi R.

's mommy

> Hi, I joined this group a few weeks ago and was going to read the

> posts before posting to the group. I decided to go ahead and post

> since there are so many post. I am trying to learn about RSS

because

> altough my child has not been tested for this, she shows many of

the

> signs of RSS.

>

> Hailey is 3 years old and weighs 20 lbs. She was born 12 weeks

early

> and weighed 1 lb 12 and 1/2 ozs. She was small for her gestational

> age and grew very slowly while in the NICU. She stayed in the NICU

> for 68 days until she reached her " going home " weight of 4 lbs.

>

> While in the NICU they tested her for everything they could think

of

> (not RSS, but everything else that could go wrong). They even

tested

> my breastmilk to make sure it had enough calories. Most breastmilk

> is 20 cal. and mine was 28 so they figured that was surely not the

> problem.

>

> All this time I thought that I just had a normal preemie and that

> everything would work out. They kept telling me that most preemies

> catch up by the time they turn two.

>

> We have had all kinds of specialists in the mean time. We had to go

> to a Retina specialist because she had ROP and that finally cured

on

> its own so that was one that we could mark off of our list.

>

> The second one came when she was admitted to the hospital for

> pneumonia. The children's hospital that she was admitted to wanted

> to get her seen by a genetics doctor while she was there because of

> her size. This doctor checked a few things and done a MRI because

of

> her hermangyomia (not sure on the spelling)on her back, so they

> could be sure that it was not interferring with her spinal cord.

She

> recommended eventually that we send off her blood work to the

Mircle

> Foundation to check for RSS. The only thing is that they do not

> accept her insurance and we can not afford the test.

>

> Third came endo. We have been seeing her every six months. She is

> wanting to put Hailey on GH, but we are very worried about the side

> affects and everything else that could go on and I really don't

want

> her to have to have a shot every single day. I feel like she has

> been stuck enough. On the other hand I want to give them to her

> because I want to do everything possible to help her. I just don't

> feel it is appropriate to give her the shot when we don't really

> know why she is not growing and her normal GHs are fine.

>

> Fourth came the gastro. For the first 13 months of life, Hailey had

> severe dirreaha and then it went straight to constapation. She has

> had the latter every since. Now she is on Lactoluse and has been on

> it every since we started going to him. He wants to eventually wean

> her off of it, but probably won't for a while yet.

>

> With the last hospital stay (pneumonia again) they are suggesting

> sending her to an allergy specialist. Hailey has asthma and seems

> like everything sets it off. We are trying to keep her from getting

> sick.

>

> I don't know if any of you are having all of these problems, but I

> just don't know what to do. No matter how bad I wantted to, I could

> not get a job because she stays sick so much and has to go to so

> many specialist. I am about ready to throw up my hands and say I

> quit. I know I can't because Hailey needs me so bad, but I am so

> frustrated. I know this is long so I will post later. If anyone has

> any suggestions on this please let me know.

>

>

>

[Guest guest]

Hi, My name is and I was disgnosed with uip. I have spent the last couple

of days reading all your messages and the words of encouragement. Thank you. I

am not sure how to do this message board so I hope that I am doing this right.

Any insight on how you passed from shock to acceptance would be helpful