RE: New Member

[Guest guest]

Hi Robin,

Welocome to the list Danna already mentioned MAGIC and a quick way to get

there is go to the RSS-Support Main page. click on 'Links' and on the the

'Links' Page you will see one for MAGIC with thewir address. You have found a

wonderful supportive group sfilled with info.

In terms of a child growing out of their lack of appetite. I am not so

sure " growing out " would be the way I would were it my five year old

daughter's appetite has increased with age but not to the point she eats

enough to sustain growth. The ways it has been worded to me is my daughter

needs to learn that she has to eat. When she understands that she has to eat

to maintain growth then she will not need her Gtube. The whole concept of no

appetite is hard to grasp. I for one cannot imagine not wanting to eat!!!

To my friends,

Peace and Prayers

Mark dad to 4 ( 5 in April), G-tube

[Guest guest]

Hi, Robin

Welcome to the list! RSS is a form of dwarfism and you can find out

bunches about it at Magic web site. They have a rundown of RSS and several

other different growth related disorders. I thought I had the address

handy, but I couldn't find it off the bat.

I know how your sis feels. I have a 4yr old son with RSS. If you would

like to see some photos of other RSS kids click on the files header in the

RSS support group area, my son is in the file named Danna's son. I've

been on the list for almost a year, and I've found out so much from this

group.

Again, welcome to the group and we would love to hear more about your

nephew.

Danna, mom to Carol 12, 10, and 4 RSS

> Hi, I'm looking to find out as much as I can about Silver

> syndrome, as my seven year old nephew has recently been diagnosed with

> it. While there's nothing heartening about him having it, reading up on

> it as far as I have already has greatly relieved his mother's mind; we

> didn't realize that his lack of appetite actually had anything to do

> with a disorder. We thought he was small and skinny because he had no

> appetite. In reading this my first question for the list is this:

> It says that lack of appetite is something that RSS kids grow out of.

> How old are they usually when they outgrow it?

> Thanks,

> Robin

>

>

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

> Your high school sweetheart-where is he now? With 4.4 million alumni

> already registered at Classmates.com, there's a good chance you'll

> find her here. Visit your online high school class reunion at:

> http://click./1/3139/0/_/229381/_/956484909/

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

>

>

>

[Guest guest]

Robin's response to me did not make it to the entire list, so I am forwarding

it on. JS

In a message dated 4/24/00 3:39:39 PM Pacific Daylight Time,

biteme@... writes:

<< I hope this is making it to the entire list, if not, it's not a big deal

anyway,

but here goes:

He lives in rural Virginia. His doctor is in Richmond at a special Children's

Hospital. Doctors, anyway. It did not occur to our regular doctors for a

long time

to worry about his slow weight gain as many close relatives are very small

people,

and he was premature.

The doctors aren't really doing the greatest job in the world of making sure

that

my sister is fully informed of what is going on around her. I'm trying to

rectify

that by finding out as much as I can from the list and the web.

Thanks to everyone who has replied )

Robin

>>

[Guest guest]

Hi Robin,

Where in Virginia do your sister-in-law and nephew live. We live in VA

too - Virginia Beach. We see Dr. Harbison in NY and now a local Ped Endo at

Children's Hospital of the King's Daughters also.

(Mom to - 29 1/2 in, 16 lbs, RSS)

[Guest guest]

,

How often do you see Dr. H? Does she work through your Ped Endo and/or

GI

locally? We just started seeing her in March, 00 and she said she would

work

with our GI or Ped Endo in assuring we're on the right path for growth.

We see

our GI tomorrow, and am wondering if she's even contacted him yet or

not.

Please share your expereinces with her if you can.

thanks!

Cheryl

Mom to , , and (RSS, gtube, etc.) - all 26 months.

[Guest guest]

Oh my goodness! That's awful!

I have always said to myself thank God has a twin () who's

fairly big for his age! They (DSS or whatever) would think I was

neglecting my kids!

My son (born @28 weeks weighing 1# - 450 grams) has had a lot of doctors

appointments. We were also taking him to the chiropractor because he

falls a lot. We got a call from the insurance company asking us all

sorts of funny questions about his appts. My husband just said if YOU

had a 1 pound baby, you would know what kind of medical care is

involved! And isn't even that involved! Many kids born his size

have brain bleeds, CP, and the list goes on.... Then they mentioned

about the emergency room visit in Marlboro... WRONG kid! has

NEVER been to that hospital! ALEX was the one who went to the ER cuz he

split his head open when he fell off his Lil Tykes truck cuz his

grandparents came over during a weeknight and they were up past their

bedtime all wound up! Many kids do things like that and don't get

blamed for bad parental behavior.

Anyway, enough said.

Regards,

Sue R.

New Member

I have a few questions for the list, since I'm a new member I don't

really

know if this has been discussed before.

My granddaughter has been diagnosed with RSS. She is now 20 months old.

Before she was diagnosed her pediatrician reported her parents to DFCS

for

child neglect, (they said she wasn't feeding her properly, etc.), they

took

her from them, and we've only had her back now for about 6 months. No

more

problems, yet.

I was just wondering if anyone else has had this type of experience, and

what

can be done about it. I find it hard to believe that this kind of thing

goes

on.

Neva in Georgia

[Guest guest]

Neva -

" Oh my gawd " is what I must admit I said outloud when I read your email. I know

many of us have typed about the comments we have received from people/medical

professionals about whether or not our children are picky eaters, etc. But to

have DCFS take the child away? How long was your grandchild away from your

family?

Anyways!!! I would call the Magic Foundation right away. 1-800-3MAGIC3. They

have a list across the US.

Plus, there is an RSS family from Georgia that was at the Magic Convention this

past July in the RSS seminar. Here is their name and address, although I don't

remember them so I don't know there story. You might be able to write them and

ask them who their physicians are?? & Yvette Getch, 1090 Sagefield

Drive, Watkinsville, GA 30677. I don't know how close you are to Louisiana,

but there is another: K. Meyers, 12380 Northwood Crossing, Hammond, LA

70401.

The key will be to have at least ONE doctor that is well-versed about your child

and RSS. It could be a geneticist, an endocronologist, even a pediatrician.

Our pediatrician doesn't know much about RSS, but she reads all the time, calls

us every 2 weeks to find out what is happening, asks for copies of all notes

from 's specialists, and watches like a hawk. We love her to

death. I can't expect her to know all about RSS, as a pediatrician.

Anyways. Has the DCFS file on your grandchild been erased? Or whatever the

legal term is? It will be very important that your children have a legal

document that shows the RSS finding and how DCFS was wrong, and carry it with

them all the time. The reason for this is that like Pattie said, RSS kids often

get hurt (just like normal kids). But emergency room personnel sometimes take

one look and say " wait a minute, possible child abuse. " We have definitely gone

through this more than once. If they suspect anything, they might call and

learn that " a file exists " . It could be a horrible sorting out of the paperwork

to make them realize the prior time was an error. Better I think to be up-front

and have stuff with you.

Anyways. I typed way too much. I am sorry for what your family has had to

endure. Now you found this list!!! Things will look up!

Salem (, 4.7, RSS)

[Guest guest]

Neva,

I am so sorry for you and your family. Unfortunately for many

parents of RSS kids, most people believe that you must be doing

something wrong if your child looks so small. I think that the

diagnosis of RSS will help you greatly because now you have a medical

reason for your granddaughter being so small. Someone else wrote a

message about carrying around information on RSS in case you need to

have your child treated by a doctor and they don't know what it is.

I think this is a very good idea.

I would also like to warn you that the future may bring additional

problems in regards to the doctors that you take your granddaughter

to. In our experience RSS kids fall down more and usually get more

bruises and scrapes. Because their heads are bigger than their

bodies, we found that Jonathon hit his head hard every time he took

the slightest tumble. In our case Jonathon also has a little

assymetry in his head so one side sticks out in the front more on his

forehead. It seemed like everytime he even tripped, his heavy head

would go straight to the ground and hit directly on one side of his

forehead. He always seemed to have a golf ball sized goose egg after

every fall. I guess we are lucky that no one turned us in!

Jonathon even fell as we exited an airplane in South Bend after being

in the hospital for a week in New York. I didn't even make it home

between operation and stitches in his head. I just don't think they

have the strength to stop their heads from hitting!

We have found some great doctors who have researched RSS with us

and participate in his care and understand him and his needs. If you

can find someone like that they will be a blessing to you and your

family. Good luck and God Bless.

Pattie Madison(7) Jonathon(5, RSS) (1)

P.S. You might suggest to any doctors you know to check out the

www.rsskids.com website, for information and pictures!

[Guest guest]

Oh Neva how awful for you and your family. It is just disgraceful that doctors

are not up to date on conditions like RSS and make the decision to call in

children's aid.

The only thing I could suggest is you check out the web site at the magic

foundation. www.magicfoundation.com Click onto the area that describes the

syndromes and find RSS. Then I would print out the page. It is a good list of

symptoms, causes (which are unknown) and it nicely summarizes with " parents have

done NOTHING to cause it. " Then make sure the parents of your grandchild carry

this with them at all times. Whenever you have to go to a doctor or clinic that

is not familiar with your grandchild you can show them the sheet.

Hope that helps.

Debby

munchnt@... wrote:

>

> I have a few questions for the list, since I'm a new member I don't really

> know if this has been discussed before.

>

> My granddaughter has been diagnosed with RSS. She is now 20 months old.

> Before she was diagnosed her pediatrician reported her parents to DFCS for

> child neglect, (they said she wasn't feeding her properly, etc.), they took

> her from them, and we've only had her back now for about 6 months. No more

> problems, yet.

>

> I was just wondering if anyone else has had this type of experience, and what

> can be done about it. I find it hard to believe that this kind of thing goes

> on.

>

> Neva in Georgia

[Guest guest]

Thanks for letting me know about the RSSkids website. It is great, also to

have somewhere to tell these people where to look for information. Maybe

then they'll give me my information I've searched for back.

Sorry, for being so nasty.

Neva

[Guest guest]

Thanks for the support. DFACS had Cheyenne for 4 months, during

which time I was not allowed to have any contact with her.... I'm just her

grandmother. Her father (my son) and her mother were allowed one 30 minute

visit at the DFACS office each week. My son and his wife were devastated by

this, when they came to get Cheyenne, the caseworker brought a a deputy

sheriff with her, because my son questioned them, he was arrested, for

disorderly conduct.

So not only did we have my granddaughter snatched away, my son thrown in

jail, my daughter-in-law was also pregnant at the time, and went into

premature labor. Instead of being able to go to my son, I had to rush her to

the hospital, call my other son to go bail his brother out of jail. Then I

had to come up with the money to bail him out of jail, and the money to hire

an attorney to help him. (My son is the only one working in his family, and

is on a very limited budget). It has been a most expensive year.

Then after I harassed DFACS, I got in touch with the Supervisor, who asked me

why Cheyenne hadn't been placed with me, and I didn't know. So then we found

out in order for her to be placed with my husband and me, we had to go

through MAPPS training and become Parents - 10 weeks long. They did

however, place her with us while we were going through the training. This

has been the most screwed up mess I have ever lived through.

The file is still open, they are going to continue to watch my son and

daughter in law for 3 months. Like I said, they come to there house twice a

week to 'inspect it', and council them.

Neva in Georgia

[Guest guest]

,

We really would love to switch doctors, but right now DFACS won't let us.....

It's all soooooo screwy. They are so concerned right now, because there are

so many suits going on in Georgia against DFACS being negligent. I think

that's one reason they are putting us all through the wringer.

Neva in Georgia

[Guest guest]

Jodi, all I can say is thank you. I'm so glad my hubby found this site for

me. It's only been a day and finally I have somewhere I can vent all the

frustration and despair I've felt for the past 10 months.

Neva in Georgia

[Guest guest]

Everybody keeps telling me to contact MAGIC so I guess I better.

Thanks everyone...

Neva

[Guest guest]

Hello Group,

I'm a new list member. I have a 4 year old son with RSS. I always tell people

Yes, he's little but he's mighty. And usually inform the rude one's with yes

he is little but he does'nt know that. I had a man shout across a restaurant

one day (literally) Hey lady was he born premature or something. I gave him

one of my classic dont make me hurt you looks and said with a resounding

voice NOPE and we walked out the door. Crazy the extremes some people will go

to sometimes. I took every-oppurtunity to fill my friends & family in on RSS.

But found that all of them fell madly in love with him.He is definitly not

lacking in the handsome department. We started pre-school a week ago and

there is a definite difference. I figure as long as I can keep him un-aware

that he is any different we will be OK. The realist in me knows that wont

always be the case, but for now I want him to enjoy himself. His eyes were

just as full of wonder on the first day of school as the big kids..Warmed my

heart..

One day at a time.....

Dawn & Foxall

Unseen to the naked eye the crown of jewels he wears on his head

[Guest guest]

Hi Neva

Welcome to the list!!! I hope all is well with your granddaughter is

doing well and I'm glad she is back home with her parents. The whole

experience must have been so traumatic for the whole family. I hope the

pediatrician see the error of her ways and feels really guilty about it.

Sorry I just had to vent a little about this. My son is 4 now, but I

remember how hurt I felt when a stranger would comment on how my 8 month old

looked like a new born. I had an experience in a hospital, or all places,

that I felt kinda bad about for a long time: had been admitted to the

hospital when he was around 9 months for pneumonia, it was a Friday and he

stayed in four 4 days. Every Tom, Dick and Harry who came into our room

commented on how small he was and wanted to know details about how he was

doing. Thank God we had a DX by this time and were able with our limited

knowledge of RSS, to explain as best we could s condition. It wasn't

just the nurses and med. staff that asked questions it was everyone who came

into the room or walked by while the door was opened. Well, on Tuesday

morning, a shift change produced a new nurse. She had been off for an

extended weekend and commented on how she didn't know the hospital had

delivered another baby while she was off. I didn't correct her. I just

commented on how beautiful my NEW baby was!!! We were leaving that morning

and I was exhausted and probably looked like I had just delivered a NEW

baby. Oh well, we do a lot of things that may not seem right on looking

back on them, but I was just so tired of dealing with people who probably

already had an opinion on why my son was so small, and just had to hear for

themselves the whole story.

Sorry to vent such a long letter.

Danna, Mom to Carol 13 10 and 4 RSS, Hypospadias (repaired) 22

lbs.

P.S. Where in Georgia? e-mail me directly at danna5@... if your not

comprortable going through the list. We live in Hiawassee, GA. Near the

North Carolina/Georgia line.

New Member

>

> I have a few questions for the list, since I'm a new member I don't really

> know if this has been discussed before.

>

> My granddaughter has been diagnosed with RSS. She is now 20 months old.

> Before she was diagnosed her pediatrician reported her parents to DFCS

for

> child neglect, (they said she wasn't feeding her properly, etc.), they

took

> her from them, and we've only had her back now for about 6 months. No

more

> problems, yet.

>

> I was just wondering if anyone else has had this type of experience, and

what

> can be done about it. I find it hard to believe that this kind of thing

goes

> on.

>

> Neva in Georgia

>

>

>

>

[Guest guest]

,

Do you think the Getchs would mind a letter or possible e-mail if the

have access from another family in Georgia? I feel like it's Christmas!

Two family's in my home state in one morning!!Prase the Lord!! I didn't

know of many families south of Mason-Dixon.

Danna

> Plus, there is an RSS family from Georgia that was at the Magic Convention

this past July in the RSS seminar. Here is their name and address, although

I don't remember them so I don't know there story. You might be able to

write them and ask them who their physicians are?? & Yvette Getch,

1090 Sagefield Drive, Watkinsville, GA 30677. I don't know how close you

are to Louisiana, but there is another: K. Meyers, 12380 Northwood

Crossing, Hammond, LA 70401.

>

[Guest guest]

Hi Dawn

My son Adam went all of his junior kindergarten year without realizing he was

" different " . Of course, at almost 8, he is very aware of it now. But I think

when

the time comes you can " prepare " your son.

Being in a Catholic school, his kindergarten teacher used this story with the

group and I've always used it....now it's old hat to Adam:

God made us all different. If we were all the same how would I ever find you?

How

would you know which mommy was yours? So God decided some of us would be tall,

some not so tall, some will have brown hair, some blonde, some will wear glasses

but we are all still perfect people. We should love each other even if we all

look a little different.

It seemed to be a story a 5 year old could relate to and has been good for Adam.

It's a slow process over the years of their life as they become more " aware " we

have to gently provide the necessary information (ie. the " why " --as best we can)

and then, most importantly, role play with them strategies to respond to

inquiries from others and especially their peers.

You have started off wonderfully and as your son gets older you will modify your

responses.

Good luck.

Debby

FOXALL5@... wrote:

>

> Hello Group,

>

> I'm a new list member. I have a 4 year old son with RSS. I always tell people

> Yes, he's little but he's mighty. And usually inform the rude one's with yes

> he is little but he does'nt know that. I had a man shout across a restaurant

> one day (literally) Hey lady was he born premature or something. I gave him

> one of my classic dont make me hurt you looks and said with a resounding

> voice NOPE and we walked out the door. Crazy the extremes some people will go

> to sometimes. I took every-oppurtunity to fill my friends & family in on RSS.

> But found that all of them fell madly in love with him.He is definitly not

> lacking in the handsome department. We started pre-school a week ago and

> there is a definite difference. I figure as long as I can keep him un-aware

> that he is any different we will be OK. The realist in me knows that wont

> always be the case, but for now I want him to enjoy himself. His eyes were

> just as full of wonder on the first day of school as the big kids..Warmed my

> heart..

>

> One day at a time.....

> Dawn & Foxall

> Unseen to the naked eye the crown of jewels he wears on his head

[Guest guest]

Neva

To add to Carmen's idea....it's a good one but I read in one of your posts

that you are extremely tight for money--as I am. I need a lawyer too. A

wonderful girl on here tonight gave me an excellent idea that you could

probably use too.

You guys down there (I'm from Canada) have " Little People of America " (I

think that's what it is called). I'm sure it's in your phone book. They

would definitely know about RSS and may even want to " represent " your family

in a suit against the state and the DF..(I forget what you guys call the

children's aid society down there). Look into it. You deserve restitution.

Debby

Carmen Snyder wrote:

>

> Neva,

> If I were you I would contact a lawyer and see if you can sew child

> protective services, and possibly the Dr. for not trying to find a

> reason for what he did, and just doing it. Also sew for return of

> your belongings. They do not have the right to take the birth

> certificates!!!!! They also should not be coming to the house every

> two weeks. I get soooo angry about the way they do things!!! They

> lets kids stay with parents that beat the living tar out of them and

> pick on good parents with special needs kids!!!

> Please call a lawyer and ask what you can do. Your poor little

> daughter-in-law is probably scared to death they will not only take

> the one child again, but all her children.

> The lawyer can get the case file closed! A letter from the Doctor

> that diagnosed should be added to the file in the mean time!!!

> Good luck and God Bless,

> Carmen, Mom to Storm, 5, RSS, 26#, 37 " tall

[Guest guest]

Hi Neva,

Little People of America is pretty easy to find on the internet. I was

a member of the e-mail group with them for a while. I was getting way to

much e-mail and had to drop. They would be able to give some good advice

about the legal stuff I'm sure. They also have some of the funniest jokes.

I know being small is no laughing matter, but when a 3 ft. adult person can

laugh at themseves it makes you think hey, we're not so bad off.

Danna

Re: Re: New Member

>

> Neva

>

> To add to Carmen's idea....it's a good one but I read in one of your posts

> that you are extremely tight for money--as I am. I need a lawyer too. A

> wonderful girl on here tonight gave me an excellent idea that you could

> probably use too.

>

> You guys down there (I'm from Canada) have " Little People of America " (I

> think that's what it is called). I'm sure it's in your phone book. They

> would definitely know about RSS and may even want to " represent " your

family

> in a suit against the state and the DF..(I forget what you guys call the

> children's aid society down there). Look into it. You deserve restitution.

>

> Debby

>

> Carmen Snyder wrote:

>

> >

> > Neva,

> > If I were you I would contact a lawyer and see if you can sew child

> > protective services, and possibly the Dr. for not trying to find a

> > reason for what he did, and just doing it. Also sew for return of

> > your belongings. They do not have the right to take the birth

> > certificates!!!!! They also should not be coming to the house every

> > two weeks. I get soooo angry about the way they do things!!! They

> > lets kids stay with parents that beat the living tar out of them and

> > pick on good parents with special needs kids!!!

> > Please call a lawyer and ask what you can do. Your poor little

> > daughter-in-law is probably scared to death they will not only take

> > the one child again, but all her children.

> > The lawyer can get the case file closed! A letter from the Doctor

> > that diagnosed should be added to the file in the mean time!!!

> > Good luck and God Bless,

> > Carmen, Mom to Storm, 5, RSS, 26#, 37 " tall

>

>

>

>

>

[Guest guest]

Hi Debbie,

Thank you so much for your response. Jake goes to a Lutheran pre~school and

fortunately at this age the kids are un~aware of anything unusual. I really

liked the little verse you sent. I will print that and memorize it, so when

the time comes I will be~able to whip that out like it was always something

that just was.

Jake was born little. 5# 4oz. We were in shock. I knew immediately something

was out of the ordinary. Lots of family members kept telling me that he would

grow out of it. I was not so sure. I thought odd that his little fingers were

curved and he had such pronounced frontal bossing. Took him to see a reg. MD

who was mine at the time and he proceeded to scare me to death with the

thought of hydrocephilis. The manner in which he informed me of this was

un~acceptable and I never ever saw him again. Onto a Ped. Group. X`rays

confirmed something was up Not hydro though. We were sent to Columbia, MO to

see Dr. Goldstein. And, then onto Genetics Dr. Hillman. I knew that

day, after seeing other children there that would need extremely special care

for the rest of there lives that we were blessed. AHHHH ACCEPTANCE.

Jake is a wonderful happy boy. Loves life and school. Runs around here like a

banshee. Laughs , is starting to come around in his speech. We still see Dr.

G. and am going to discuss some things with him that I have seen written

about here. He has kept me on a real need to know basis. That's fine with me.

I've done my own research but have backed that up with support through

friends and family so I just dont fall off the deep end with worry. Funny,

that a Dr. whom has never met me b/4 in my life could read that into me. Wear

my heart on the outside I guess..

Sorry so long, wanted to let yall know a little about us..

Dawn, Mom to RSS

[Guest guest]

Hi Dawn

Glad my little story could be of help to you. Adam was 5 lbs 3 oz at birth

(similiar eh?) but I was not expecting any long lasting problems like the RSS. I

had been hospitalized at 32 weeks of pregnancy for bleeding. I figured he was

small because there may have been a small tear in the placenta or something

along

those lines. My whole focus was on getting my doctor to " find out why " I had the

bleeding. She never did.

Adam, was slow to gain weight but was soon in the 40th percentile. It wasn't

until he was almost 2 and I went for a third or fourth !! opinion re: strange

reactions to his immunizations that I learned something was 'wrong' with him.

This idiot that called himself a doctor (I've told this story before) said " your

son has something we call funny looking kid syndrome. You know, one of those

things were they get real old by the time they are 5 and then they die. Well

thanks for coming " and walked out of the examination room!!!!!!!!!

Adam didn't have the curved fingers. And he has the large head and the frontal

bossing (but so does his dad and I). So I never dreamed I would be where I am

now. I worried my unborn baby would have big problems but when he appeared

beautifully normal, the thoughts vanished until that horrible day and I haven't

gotten off the roller coaster since.

All the best to you.

Debby

FOXALL5@... wrote:

>

> Hi Debbie,

>

> Thank you so much for your response. Jake goes to a Lutheran pre~school and

> fortunately at this age the kids are un~aware of anything unusual. I really

> liked the little verse you sent. I will print that and memorize it, so when

> the time comes I will be~able to whip that out like it was always something

> that just was.

>

> Jake was born little. 5# 4oz. We were in shock. I knew immediately something

> was out of the ordinary. Lots of family members kept telling me that he would

> grow out of it. I was not so sure. I thought odd that his little fingers were

> curved and he had such pronounced frontal bossing. Took him to see a reg. MD

> who was mine at the time and he proceeded to scare me to death with the

> thought of hydrocephilis. The manner in which he informed me of this was

> un~acceptable and I never ever saw him again. Onto a Ped. Group. X`rays

> confirmed something was up Not hydro though. We were sent to Columbia, MO to

> see Dr. Goldstein. And, then onto Genetics Dr. Hillman. I knew that

> day, after seeing other children there that would need extremely special care

> for the rest of there lives that we were blessed. AHHHH ACCEPTANCE.

> Jake is a wonderful happy boy. Loves life and school. Runs around here like a

> banshee. Laughs , is starting to come around in his speech. We still see Dr.

> G. and am going to discuss some things with him that I have seen written

> about here. He has kept me on a real need to know basis. That's fine with me.

> I've done my own research but have backed that up with support through

> friends and family so I just dont fall off the deep end with worry. Funny,

> that a Dr. whom has never met me b/4 in my life could read that into me. Wear

> my heart on the outside I guess..

>

> Sorry so long, wanted to let yall know a little about us..

>

> Dawn, Mom to RSS

[Guest guest]

Re: 's intro

welcome!

R., Massachusetts, undiagnosed RSS boy () and twin (), now 5

y.o. is 26#, is 44#.

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[Guest guest]

,

So glad you found this list. It has been a Godsend for me and my son,

Storm,5,RSS. I hope you are able to find the answers you need. Storm is 38 " tall

and 27lbs. He is the smalles in his class and seems smaller than a lot of the

kids on this list that are close to his age and even younger.

We are going to see Dr. Harbison in NY in December,(28th)

We went to the MAGIC convention this past July in Chicago.

If you look at the files list there are some pictures from the convention there.

We had about 40 families with RSS children, and 25 affected children. It was so

wonderful for us and for our son to finally SEE that we were not alone.

Storm used to complain every day about how small he was, but since the

convention, he hasn't mentioned it.Why? I think because he finally realized that

he wasn't the only small person in the world, and that there were some that were

even smaller than him.

Nice to have you here on our list.

Carmen, mom to Storm, rss, 5, opposite asemmetry, periactin, 38 " , 27#, and mom

to Paisley 7,none of the above, and wife to , wonderful husband!

[Guest guest]

Carmen,

my son, , is 5 y.o. (June 30) and 26#, 39 inches tall - much like

Storm. and is " going to marry today " ! LOL!

Sue R. :-)

>>Storm is 38 " tall and 27lbs. He is the smalles in his class and seems

>>smaller than a lot of the kids on this list that are close to his age and

>>even younger.<<

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