New to RSS

[Guest guest]

Hello

Welcome My husband and I joined last week we were trying to find a

doctor for our daughter na. One of her feet curve under too.

She is 3.8 years and 24 lbs 33.25 inches. She too has low muscle tone

and was in therapy since three months. One doctor says she has it the

other says sga. She now is well, we still have therapy but she can

carry her own doll,scribble pant standing up at a easel.

Thank you everyone for your help finding a doctor .We will going with

in a few weeks. We are on a cancellation list.

Marcy

> Maize

>

> Hello All,

> I joined your group a week ago in hopes to educate myself a little

on RSS. We just had an appointment with a geneticist last week for

our 12 month old son, Landen. After a very thorough interview and

exam, she stated that she felt he might have RSS. She based this

on: his low weight (17.4#/12 months), several cafe au lait spots on

his trunk, large forehead, low muscle tone and enlarged liver. He has

always been a good eater and right now is in love with table food!

He has had physical and occupational therapy 3X week since 3 months

of age and wears glasses with prism lenses to help strengthen his

eyes. He is also getting fitted for ankle/foot orthotics to help

with his muscle tone while he stands and hopefully walks. We have

had extensive neurological testing done (bloodwork, MRI) to find a

reason for his low muscle tone and did not find anything. The

geneticist will do bloodwork, bone age scan, and ultrasound on the

liver this fall. My husband and I will also have bloodwork done?

>

> Here are a few questions if anyone has time to answer?

> 1. Does EVERY child with RSS have incurved pinkies? Landen does

not, but his pinkie toes are incurved.

> 2. Are there specific characteristics that EVERY child has and

some that are variable?

> 3. When does the growth delay typically happen? Is it always

prenatal onset?

> 4. Are there any other genetic disorders that look like RSS that

might fit his characteristics?

> 4. Any other advice or thoughts that I should be considering.

>

> Our testing is in October and then will have a follow-up with the

geneticist.

>

> Thanks for the information!

> Cheryl Bremer

> Warsaw, IN

> Mother to Evan-6, Jenna-4, and Landen-1 TODAY!!

>

>

>

>

[Guest guest]

Cheryl,

Weclome to our group, we area source of great information and

help.

Our daughter gaby, 22 months weighing 16 lbs, does not have the

curaved fingers, she is also a really good eater. Not all children

have the same degree of RSS. If you are not happy with the RSS

diagonis, go to another gentics.

Good Luck

Stella

> Maize

>

> Hello All,

> I joined your group a week ago in hopes to educate myself a little

on RSS. We just had an appointment with a geneticist last week for

our 12 month old son, Landen. After a very thorough interview and

exam, she stated that she felt he might have RSS. She based this

on: his low weight (17.4#/12 months), several cafe au lait spots on

his trunk, large forehead, low muscle tone and enlarged liver. He

has always been a good eater and right now is in love with table

food! He has had physical and occupational therapy 3X week since 3

months of age and wears glasses with prism lenses to help strengthen

his eyes. He is also getting fitted for ankle/foot orthotics to

help with his muscle tone while he stands and hopefully walks. We

have had extensive neurological testing done (bloodwork, MRI) to

find a reason for his low muscle tone and did not find anything.

The geneticist will do bloodwork, bone age scan, and ultrasound on

the liver this fall. My husband and I will also have bloodwork done?

>

> Here are a few questions if anyone has time to answer?

> 1. Does EVERY child with RSS have incurved pinkies? Landen does

not, but his pinkie toes are incurved.

> 2. Are there specific characteristics that EVERY child has and

some that are variable?

> 3. When does the growth delay typically happen? Is it always

prenatal onset?

> 4. Are there any other genetic disorders that look like RSS that

might fit his characteristics?

> 4. Any other advice or thoughts that I should be considering.

>

> Our testing is in October and then will have a follow-up with the

geneticist.

>

> Thanks for the information!

> Cheryl Bremer

> Warsaw, IN

> Mother to Evan-6, Jenna-4, and Landen-1 TODAY!!

>

>

>

>

[Guest guest]

Hi Malathi,

Dr H is now located at Mt. Sinai hospital on 98th street in NYC.

She is the foremost expert on RSS in the USA. She recently re-

located there and is not yet seeing new patients. However, her

phone number is . You can call and find out when she

will be seeing new patients. I would strongly recomend you seeing

her as soon as possible.

My son (also a twin) has RSS. He started GHT in January. We had no

problem getting it approved by our insurance company. Last year the

FDA approved the use of GHT for SGA children who had not experienced

catch-up growth which made it easier for " our " children to get it.

We took a poll a long time ago regarding now many of us used

fertility drugs, but I don't think we did one on multiple births.

Dr H has copious records however.

The convention is held annually in Chicago by the Magic Foundation.

Magic is a foundation for various growth disorders. Their website

it magicfoundation.org Dues are very reasonable ($30/yr). You get

all sorts of wonderful information from them. There is also an RSS

gathering in MA in April and Jodi Z was talking about hosting

something in her area (she is in NJ but I don't remember where in

NJ) in October.

Where in NJ are you? We live in Dobbs Ferry (Westchester County)

NY. I too work in NYC. There are a lot of us in this area.

Feel free to email me directly with any other questions.

Judith, Steve, (RSS) and (non RSS) 4 1/2 year old twins

> My son was diagnosed with RSS yesterday at New York Prebyterian

> Hospital. I would like to join this group and learn about all of

> your experience, treatment options etc. I read a bunch of threads

> from this week and noticed a lot of you are in the New York area

and

> see a Dr. H. There was also a discussion about a " convention " .

Any

> local info would be really helpful. We live in NJ. I work in NJ

and

> my husband works in NYC.

>

> My son is 2.5 years old. He is a twin (like many others in this

> group - any research on that?). He weighs 20 lbs and is 32 "

tall.

> We have been to a number of specialists. He was born at 28 weeks

> gestation and has congenital hypothyroidism. So, we had to

> eliminate many other diagnoses that could have been caused by

> prematurity and hypothyroidism before reaching the RSS diagnosis.

>

> We have been recommended GHT, but am not sure if insurance will

> cover it. What has all of your experience been?

>

> Thank you in advance for your responses.

>

> -Malathi

[Guest guest]

Hi Malathi and welcome. My name is and my daughter

who is 4 1/2 is RSS. I have a daughter Kelli 2 who is not. My

daughter was also diagnosed at Columbia Presbyterian. She was seen by

Dr. Chung. Who did you see? We also live in New Jersey,

Boonton, New Jersey. Where do you live. There are about 5 of us that

live in New Jersey and we are actually getting ready to do a gathering

for those who live in the tri state area in October. My daughter was

at Columbia for open heart surgery in November 2003 and prior to that

her cardiologist wanted her seen by the geneticist prior to her

surgery and that was the diagnosis. We have seen an endocrinologist

here at town Memorial Hospital, Dr. Silverman, who confirms the

RSS. We are on the waiting list to see Dr. Harbison. She has over

130 patients with RSS. She recently moved her office from Cornell to

Mt. Sinai.

The Magic Foundation has a convention every year and it just passed

(the last weekend in July) and Dr. Harbison speaks at it. I did not

go this year, however I plan to next year.

You found a great support group. Welcome. You can e-mail me

privately if you would like to let me know where in NJ you live.

B

4 1/2 RSS 29lbs and just almost 37 inches and Kelli 2 NON RSS

> My son was diagnosed with RSS yesterday at New York Prebyterian

> Hospital. I would like to join this group and learn about all of

> your experience, treatment options etc. I read a bunch of threads

> from this week and noticed a lot of you are in the New York area and

> see a Dr. H. There was also a discussion about a " convention " . Any

> local info would be really helpful. We live in NJ. I work in NJ and

> my husband works in NYC.

>

> My son is 2.5 years old. He is a twin (like many others in this

> group - any research on that?). He weighs 20 lbs and is 32 " tall.

> We have been to a number of specialists. He was born at 28 weeks

> gestation and has congenital hypothyroidism. So, we had to

> eliminate many other diagnoses that could have been caused by

> prematurity and hypothyroidism before reaching the RSS diagnosis.

>

> We have been recommended GHT, but am not sure if insurance will

> cover it. What has all of your experience been?

>

> Thank you in advance for your responses.

>

> -Malathi

[Guest guest]

Hi and welcome to our huge family. That's what this listserve is

going to feel like to you. And if you join the MAGIC Foundation,

and attend the convention next July, you are going to feel like you

are at a family reunion. It is great.

Where in NJ do you live? We live in Madison, just outside of

town. We are actually about 15 minutes away from and

her daughter . (I teach just a few blocks from where they

live!)

My son Max has RSS and he is now 16 years old. He, too, was

diagnosed at NY Presbyterian/Columbia. Dr. Kwame Yaboa diagnosed

him. He was one of Dr. Harbison's first RSS patients. We've been

through a lot with her.

Again, welcome to our group. It's great.

Jodi Z.

[Guest guest]

My 7 month old daughter has just seen a geneticist after falling

even further off the charts at 12 pounds and 24 inches. He looked at

her and said she looked like a RSS baby and we are now undergoing a

chromosome test for her. (Her pediatrician had already done bloodwork

and a urinalisis. All was normal) He thinks that is what she has

but there are not many tests available. We will do a chromosome test

involving her dad, myself and her to compare the 7th chromosome but

he said there is only 10% of children with this syndrome that this

test would cover and there are no other reliable tests to date.

It would help me to hear others stories on how your children were

diagnosed and what their sizes and devolopment were at 7 months. She

does have many characteristics of this syndrome including IUG. She

stopped growing in utero at 32 weeks, came out at 38 1/2 weeks at

only 5 pounds 6 ounces. She has remained under the 3rd percentile

for everything and is now falling off, especially with weight. (12

lbs.) Otherwise she seems very healthy. The doctor has not

officially diagnosed RSS but he is really leaning towards it. Any

story shared would be greatly appreciated.

Thanks

[Guest guest]

If you don't mind me asking Who is 's Cardiologist in NY? and where

did she have her surgery?

(34) Single Ventricle, TGA..Bi-Directional Glenn 2/91..NO Fontan....MS

Mom to Liam (3 1/2) years old 34 3/4 " 27 lbs

SGA / possible RSS, Hypothyriod, Epilepsy.

Started GHT 5/18/04

and Jed (11 1/2 years old) Tourettes, CAPD,SVT.

SW Orlando FL

**Push for Bush, be Weary of Kerry**

Check out my group:

http://health.groups.yahoo.com/group/ToddlerswEpilepsy/?yguid=174302728

[Guest guest]

Hi there and welcome to the group. Our youngest daughter, Olivia,

has RSS, she was diagnosed as severe IUGR with a 2 vessel cord at

birth and was diagnosed RSS at 3years old after ruling out a ton of

other syndromes and reasons for her being small. She's now almost 5

years old (going on 9, ugh!). At 7 months Olivia weighed 9lbs even

and was 21 " long, she started to roll over at around 8 months and

sat up at 12-13 months, walked at 25 months. We also had the UPD 7

done and it came back negative. Olivia has never been on any of the

growth charts either but she has her own curve, or flat line as we

like to call it, that she follows.

You've found a great group of people here, it's truly like a

family.

Leah, mom to 9yrs and Olivia 4.75yrs, 18lbs, 33 " , RSS, OI,

tons of meds

> My 7 month old daughter has just seen a geneticist after falling

> even further off the charts at 12 pounds and 24 inches. He looked

at

> her and said she looked like a RSS baby and we are now undergoing

a

> chromosome test for her. (Her pediatrician had already done

bloodwork

> and a urinalisis. All was normal) He thinks that is what she has

> but there are not many tests available. We will do a chromosome

test

> involving her dad, myself and her to compare the 7th chromosome

but

> he said there is only 10% of children with this syndrome that this

> test would cover and there are no other reliable tests to date.

>

> It would help me to hear others stories on how your children

were

> diagnosed and what their sizes and devolopment were at 7 months.

She

> does have many characteristics of this syndrome including IUG.

She

> stopped growing in utero at 32 weeks, came out at 38 1/2 weeks at

> only 5 pounds 6 ounces. She has remained under the 3rd percentile

> for everything and is now falling off, especially with weight. (12

> lbs.) Otherwise she seems very healthy. The doctor has not

> officially diagnosed RSS but he is really leaning towards it. Any

> story shared would be greatly appreciated.

>

> Thanks

[Guest guest]

Hi-

My son just turned 7 mos August 19th. When he was born he weighed

4lbs 12 oz and was only 15 " . He spent the first 2 weeks of his life

in NICU and the neonatologist sent us to a genetics appt when he was

2 mos old because he suspected achondroplasia. The geneticist said

that he didn't have Achondroplasia but he was definately IUGR and

since he had a " large head in proportion to his body " and the

curving pinky finger she couldn't rule out RSS and wanted to see him

again in 6 mos (september). I started reading everything I could on

RSS " just in case " and that is how I found out about this group. We

went to Chicago last month and Dr. H confirmed RSS (In my heart I

knew he had it..he has alot of the typical characteristics). He was

born with hypothyroidism and so he sees an endocrinologist along

with his pediatrician. They told me that he could sleep through the

night and until I found this list serve he would go 6-8 hours at

night without eating because I didn't know any better. It really

bothers me that if the geneticist thought he could have RSS that she

didn't fill me in on the hypoglocemia risk. None of the Dr's picked

up on asymetry but Dr. H found that one leg is 1/4 " shorter than the

other. I never really noticed..anyway welcome to the group...glad

you found us!

Mimi

Mom to Isaac (RSS, hypothyroidism, synthroid, Zantac)

P.S>- Sorry for the spelling errors..it's been " one of those days " !

[Guest guest]

Hi, I'm and my daughter has just recently been diagnosed

with RSS also. She is 9 months old, 24 inches, 12lbs 15 oz. She

did the UPD7 test which came back negative, and we ruled out

everything else that could be causing it, and her genetisist along

with the other ones at children's hospital in cincinnati agreed on

the diagnosis of RSS. So I am relatively new to this to. Good luck

to you!

mom of Autumn and 2 boys

>

> Hello. I am new to RSS - my soon to be 10 month was recently

> diagnosed with this a couple of weeks ago. I thought that it would

> be interesting to talk with other parents that are going through

this.

[Guest guest]

hi and welcome to this great group of supportive and caring rss/sga

families!!! i hope you will soon feel like a member of this great

extended family!!! is your child a boy or a girl and what is their

name? where are you from? what are some of their rss

charecteristics? i have a 3 1/2 yr old boy, christopher, he is on

periactin. he is 25lbs 13oz and is 36.3 " tall. he has assmentry on

his left side (leg is 1cm shorter and his left foot, arm, and hand

are smaller than the right in size and thickness) he is possible

ADHD (most likely!!!) he attends preschool 5x a week at the

elementry school where he receives some slight OT. he is a very

bright and happy boy!!! he met all his milestones on time. he does

not have a g-tube. feel free to email me at jlcals2003@ yahoo.com

(no space after @) did you go to the Magic Foundation's website

yet www.magic foundation.org they are a great org. for families

of children and adluts with growth disorders. they have a

convention every july in chicago that is just awesome!!! we went

for the first time this year!!! they supply their members free info

and support for a $35 yearly membership fee!!! good luck!!!

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

nicholas-6 1/2 nonrss, christopher- 3 1/2 rss 25lbs 13oz 36.3 "

periactin, ght (genotropin still on hold until catch up growth

complete), assmentry (left side 1cm), ADHD (possible), johnathon-

16months nonrss)

PS there is also an expert rss dr in nyc, dr harbison.

>

> Hello. I am new to RSS - my soon to be 10 month was recently

> diagnosed with this a couple of weeks ago. I thought that it

would

> be interesting to talk with other parents that are going through

this.

[Guest guest]

hi katherine!!!

i have 3 kids and my middle child is the only rss child!! though

there are a couple of case where there are 2 rss kids in one famliy

it is very rare (jen s. probably knows the stats.) try not to let

this worry you to much if you are thinking of having another. good

luck!!! there are a ton of families on here that went on to have

more kids after their rss child and they are nonrss. plus we have

some multiple birth children that only one of them (twins and

triplets) is rss.

jodie c.

> > >

> > > Hello. I am new to RSS - my soon to be 10 month was recently

> > > diagnosed with this a couple of weeks ago. I thought that it

> would

> > > be interesting to talk with other parents that are going

through

> > this.