Re: Possible RSS

[Guest guest]

Kataricia,

Welcome to our group!!!! My name is and I'm the mother of

Christian who is 3 years old and has RSS. He was born 7 weeks early and weighed

2

lbs. 1 oz. and was 13 in. long. We live in Illinois and went through the Early

Intervention program for developmental delays also. He currently weighs 21

lbs. Hasn't gained a pound since Oct. but he has been sick 8 times since then.

So it's really no wonder.

It is very easy to focus on the negative. But as our son has grown

we've realized how " normal " he is. He is EXTREMELY high energy. And all boy.

Loves any kind of sports. Idolizes his big brother.

You need to realize that nothing you did caused his RSS. It's easy to

blame yourself. It's human nature to look for blame. (Especially when my

in-laws kept saying this doesn't run in OUR family.) The cause is unknown.

Could

be something called UPD 7 (uniparental disomy 7) but that's in only 10% of

the cases.

You said your dr. didn't give you a lot of info. about RSS, so let me

give you a brief synopsis. There is no " test " for RSS. It's really based on

features. RSS kids have broad foreheads, small chins, low appetite, low birth

weight, some have curved pinky fingers, etc. If you go into the pictures

section of the group there are a whole bunch of pictures of our RSS kids. My

son

Christian is in there.

Are you a member of MAGIC? They are the only foundation that deals with

our kids. They have a yearly convention in July in Chicago. We went for our

first time last year and it was wonderful. I believe the number to join

MAGIC is 1-800-3MAGIC3. It costs $30 for one year. And you receive a quarterly

newsletter and access to their library of articles.

I hope I didn't overwhelm you any more. I just want you to understand

that 1) this isn't your fault and 2) it isn't that bad. The appetite and

weight needs to be at the top of your list but there are far worse things.

Feel free to email me privately if you need to. rssmom1@...

mom to , 6, non-RSS and Christian, 3, RSS

[Guest guest]

I dont know if your son has already seen an endicronologist, but

regular supervision of endocrinologist is a must for SGA/IUGR kids,

whether RSS or not.

Sabina

[Guest guest]

Hi there-

My name is and I have a daughter with RSS!! We found out she had

this when she was 2months old. She was also born early and weighed 2lbs 7oz at

34weeks. I was also haveing those thoughts when we found out. What could I

have done wrong for my child to have such a syndrome. Never did I think I

would have such a wonderful little girl and I really mean little. My daughter

will also be 2 in April and she only weighs 14lbs and is 29 1/2 in tall. She

is

the ligt of my life and I could not thank God more for giving me this special

child. All of us parents feel that we have been blessed to be chosen to

raise these special children. RSS is not the end of the world, trust me if it

was

I would not be here!!! My daughter is completly normal like most. She runs

all over every where and never stops talking. She is a normal two yr old but

small. She does have a G-tube and has had one since she was 2months old. We

feed her every night through the tube and let her eat during the day. She is

now on a med called periactin to help get her to be hungrey. I was so upset

about this until I went to the magic convention in July and realized that it

was alright. We live in North Dakota and do not have alot of Drs. who know

about this and I thought i was living in a nightmare until I met all those

parents

who are going through the same thing. It does get better and lofe gets alot

easier the more you learn about RSS. Do all you can to inform your family and

yourself about this and I will make you feel so much better!!!

Hang in there

(mom to laikyn)

[Guest guest]

hi karaticia!!

first of all welcome to the group!! you will learn so much from this

wonderful support group of people!! my son christopher is 3 and is

rss, he is 23 lbs 33 " and currently taking growth hormones

(genotropin) every night. he receives OT at school twice a week for

20 min. otherwise at this time he has no other medical problems. you

will notice that all the kids here have different severities of rss.

so depending on his medical needs different people could answere any

questions you might have. have you gone to magis web site yet? it

is www.magicfoundation.org they are a very resouresful and

supportive organization for families of children (or adults) with

growth problems. they have a 3 day convention every year to help

teach the families about their specific syndromes. also have you

seen an endocronolgist yet? that is your best bet to get more

answeres. remember you have done NOTHING WRONG and it is natrual to

feel overwhelmed. we have all been there and still are at times.

please take a look at the pictures of our children, if you havent

done so already. you may email me privatly at any time (even just to

vent and ramble on as you stated) that is fine we all need to. my

email is jlcals2003@... i hope we can all offer you the

support and info. that you need. also where are you from? there is a

doctor in NYC that is said to be the US expert on RSS (she is an

endocronolgist) we have our foirst visit with her next month

actually. well good luck and hope to hear more from you. please give

us more info on your son so we may be better to help you.

jodie (on of atleast 4 on this list)

(nicholas-5 nonrss, christopher-3 rss 23lbs 33 " ght genotropin .6,

johnathon-8m nonrss)

[Guest guest]

Karaticia-

You have a beautiful name .

> I guess I'm posting this messaging because I

> am looking for some positive feedback on this

> condition instead of laboring over the " negative " .

My name is Sharon and I will be 38 years old on Sunday. I was born

with RSS in 1966 but wasn't diagnosed until I was 15 years old. I'm

an Occupational Therapist for the Visiting Nurse Association (most

people don't know what an OT does...my job is to re-teach people

self-care skills, like dressing, grooming, bathing, feeding,

banking, toileting, etc., after an accident or illness). I'm

happily married to Joe, who is a Walgreens pharmacist. By the way,

he's 6'...I'm just shy 4'7 " .

If it turns out that your child DOES have RSS, there are a LOT of

TERRIFIC parents here who can give you information, advice, help, or

just an ear to listen. They've all " been there " and have

experienced what you are currently experiencing and well as give you

help in the future.

MY self-imposed job is to tell you that in the end, it all turns out

OK. As an " RSS kid who grew up, " I can tell you that I had a

happy, " normal " childhood where my height and appetite issues were

more of a concern for my parents than it ever was for me...and

nowadays, with the medical miracles of appetite enhancers, growth

hormones, g-tubes (giving the baby nutrition directly into the

stomach so he gets calories, even if he's not hungry), etc., he

probably won't even have the (mild) problems that I've encountered

by being a short person in a normal-height world.

It'll be OK and you'll get through. It's hard to believe right now

because you're in the middle of it and it's a lot of information and

you're probably totally overwhelmed. It'll get better and it WILL

be OK. Trust me.

-Sharon-

Orlando FL

Just an RSS kid who grew up

5 days short (get it? SHORT ) of 38 years

4'6.75 "

95# (down from 97. Woo hoo!)

[Guest guest]

Good Morning,

I just wanted to sy thank you to everyone who has responded to my

message. Everyone has been very kind and supportive. I appreciate

it soo much! We'll get through this together!

Gotta run for now...busy day ahead of me. Have a good one!

hugs,

karaticia

> Sharon,

>

> I too am in Orlando Fl... My son is not RSS at least we do not

think so and

> it has never been mentioned to us by our endo, but he is SGA and we

are

> fighting our insurance for Growth hormones. I just wanted to say

HI.. and I

> really enjoyed reading your last message to Karaticia It was very

well

> written and insperational to us moms dealing with raising short

statured

> children...I wanted to say thank you

>

>

> Orlando Florida

>

> " Life should not be a journey to the grave with the

> intention of arriving safely in a pretty and well

> preserved body, but rather to skid in broadside,

> thoroughly used up, totally worn out, and loudly

> proclaiming '*WOW*! What A Ride!' "

[Guest guest]

Hi Kerri:

My name is . If you go to the Magic Foundation website,

www.magicfoundation.org, and go into the category of russell silver

they explain what it is and they also list the common characteristics

and such. I believe you will find a lot of answers there. My

daughter is now 4 1/2 and only diagnosed last October. She was born

at 36 weeks and weighed 5 lbs even. She is now 29 lbs and just under

37 inches. A very common feature among the children is a prominent

forehead. I always thought that had a far set back hair line.

If your daughter is RSS you have found a great group of families who

are all very caring, comforting and very knowledgeable.

Again, go to the Magic Foundation, you will find so much information.

Good luck and let us know how you make out

4 1/2 RSS and Kelli 2 Non RSS

> Hello,

>

> My name is Kerri and I am trying to learn more about RSS. My

> daughter may have the syndrome, but it has not been diagnosed as of

> yet. She was born at 34 weeks via c section due to severe IUGR. She

> weighed 2 lbs 8 oz and was 13 1/4 inches long. She has low muscle

> tone gross and fine motor delays and is still very small. She is 25

> lbs at 3 1/2 years. She is about 33 inches tall. She always been

> below 5th percentile on the growth charts. It took forever for her

> soft spot to fill in and she also has a hypoplastic left thumb and

> single creased palms. She was a terrible eater and still very

> picky. She has a very limited diet. She also has facial asymmetry.

> I just discoverd RSS on my own and am making an appointment to follow

> up with genetics... My question is, do any of these symptoms sound

> familiar? I have not seen hypoplastic thumbs or low set thumbs or

> single creased palms listed as symptoms... can she still have RSS

> with only a few symtoms. I just need an answer as to what is going

> on with my child.

>

> Thanks in advance for your help.

>

> Kerri, Mom to Shea (pronounced Shay), 3 1/2 years, and Colton 7

> months birth weight 1 lb 15 oz(my other preemie due to pre eclampsia)

[Guest guest]

Kerri,

There are several of us in Michigan and also some in Ohio. I live

in the South west part of Michigan about 3 hours from you. However

I'm pretty sure there is a family closer to you. I know of at least

two families near the Detroit area. One of the families is very

active on the site so she should be checking in soon. I'll try to

contact her and tell her to email you.

Pattie Warren

> Hello,

>

> My name is Kerri and I am trying to learn more about RSS. My

> daughter may have the syndrome, but it has not been diagnosed as

of

> yet. She was born at 34 weeks via c section due to severe IUGR.

She

> weighed 2 lbs 8 oz and was 13 1/4 inches long. She has low

muscle

> tone gross and fine motor delays and is still very small. She is

25

> lbs at 3 1/2 years. She is about 33 inches tall. She always been

> below 5th percentile on the growth charts. It took forever for

her

> soft spot to fill in and she also has a hypoplastic left thumb and

> single creased palms. She was a terrible eater and still very

> picky. She has a very limited diet. She also has facial

asymmetry.

> I just discoverd RSS on my own and am making an appointment to

follow

> up with genetics... My question is, do any of these symptoms

sound

> familiar? I have not seen hypoplastic thumbs or low set thumbs or

> single creased palms listed as symptoms... can she still have RSS

> with only a few symtoms. I just need an answer as to what is

going

> on with my child.

>

> Thanks in advance for your help.

>

> Kerri, Mom to Shea (pronounced Shay), 3 1/2 years, and Colton 7

> months birth weight 1 lb 15 oz(my other preemie due to pre

eclampsia)

[Guest guest]

Thanks Pattie

pswmjp wrote:Kerri,

There are several of us in Michigan and also some in Ohio. I live

in the South west part of Michigan about 3 hours from you. However

I'm pretty sure there is a family closer to you. I know of at least

two families near the Detroit area. One of the families is very

active on the site so she should be checking in soon. I'll try to

contact her and tell her to email you.

Pattie Warren

> Hello,

>

> My name is Kerri and I am trying to learn more about RSS. My

> daughter may have the syndrome, but it has not been diagnosed as

of

> yet. She was born at 34 weeks via c section due to severe IUGR.

She

> weighed 2 lbs 8 oz and was 13 1/4 inches long. She has low

muscle

> tone gross and fine motor delays and is still very small. She is

25

> lbs at 3 1/2 years. She is about 33 inches tall. She always been

> below 5th percentile on the growth charts. It took forever for

her

> soft spot to fill in and she also has a hypoplastic left thumb and

> single creased palms. She was a terrible eater and still very

> picky. She has a very limited diet. She also has facial

asymmetry.

> I just discoverd RSS on my own and am making an appointment to

follow

> up with genetics... My question is, do any of these symptoms

sound

> familiar? I have not seen hypoplastic thumbs or low set thumbs or

> single creased palms listed as symptoms... can she still have RSS

> with only a few symtoms. I just need an answer as to what is

going

> on with my child.

>

> Thanks in advance for your help.

>

> Kerri, Mom to Shea (pronounced Shay), 3 1/2 years, and Colton 7

> months birth weight 1 lb 15 oz(my other preemie due to pre

eclampsia)

[Guest guest]

--- HI Kerri, I am , I have a son who is five and 1/2 he

weighs 28 pounds and is 38 inches we are on Growth Hormone to get

the help he needs to grow, I didn't know he had it till he was three

but things have been going good, HE does have alot of Dr.

appointments and therapy, but overall great little kid, he is a wild

child ! There are many different traits with RSS has it just

mild other's have it more severe, I have learned this all through

these wonderful people on here.Things might look bad and questios

like crazy but I have learned to just take it at their own pace! E-

mail me if you want to talk some more Hugs to you

's picture is on here brandon

s

In RSS-Support , " Kerri "

<kerrigoff@s...> wrote:

> Hello,

>

> My name is Kerri and I am trying to learn more about RSS. My

> daughter may have the syndrome, but it has not been diagnosed as

of

> yet. She was born at 34 weeks via c section due to severe IUGR.

She

> weighed 2 lbs 8 oz and was 13 1/4 inches long. She has low

muscle

> tone gross and fine motor delays and is still very small. She is

25

> lbs at 3 1/2 years. She is about 33 inches tall. She always been

> below 5th percentile on the growth charts. It took forever for

her

> soft spot to fill in and she also has a hypoplastic left thumb and

> single creased palms. She was a terrible eater and still very

> picky. She has a very limited diet. She also has facial

asymmetry.

> I just discoverd RSS on my own and am making an appointment to

follow

> up with genetics... My question is, do any of these symptoms

sound

> familiar? I have not seen hypoplastic thumbs or low set thumbs or

> single creased palms listed as symptoms... can she still have RSS

> with only a few symtoms. I just need an answer as to what is

going

> on with my child.

>

> Thanks in advance for your help.

>

> Kerri, Mom to Shea (pronounced Shay), 3 1/2 years, and Colton 7

> months birth weight 1 lb 15 oz(my other preemie due to pre

eclampsia)