New Member

Posted October 14, 1999 · October 14, 1999

Hi Liz

Welcome and make yourself right at home. You will find one terrific group of

people here

Love and Gentle Hugs,

Angie

http://www.onelist.com/subscribe/SantaLetters

http://www.geocities.com/acenneno_1999

http://hometown.aol.com/RLR1999/HomeRP.html

http://members.tripod.com/~autoimmune

Posted October 14, 1999 · October 14, 1999

In a message dated 10/14/1999 8:03:19 PM Pacific Daylight Time,

susuw@... writes:

<< I signed her up Roy. When we do that, it doesn't send us a message about

new

members. >>

OK, good. Thanks : )

Posted October 14, 1999 · October 14, 1999

I signed her up Roy. When we do that, it doesn't send us a message about new

members.

>>>>>>>>>>>>>

From: Rlr1999@...

, I didnt see notification for her joining.

Or perhaps I just missed it. Are you sure she is a member now? Is she

getting mail?

Roy

Posted December 3, 1999 · December 3, 1999

To Barbara

Welcome to the list.I live in Hertfordshire and have a son Christian who is

3 1/2 with RSS.He was 4 lbs 13oz at birth ,14 lbs at 1 ,19 lbs at 2. he

started GH at 2 and now is almost 38 '' and weighs around 30 1/2 lbs.Are you

members of the Child growth foundation ?There are a group of around 8

families with children between 2 and 6 years old with RSS that meet fairly

regulary.I'm afraid it is usually down here in the south but if you are ever

down here let me no.

Joanne mum to

ashley-7

kyran-5

christian-3 1/2

harry-2 1/2

New Member

> From: hariboscott@...

>

> Hi there, greetings from Bonnie Scotland where it is, surprise, surprise,

cold, wet and

> windy! Still, it's warming to find so many folk out there with the same

concerns as

> me.

>

> My wee sweetie is Hamish. He's 3 ½ and 34.5 inches tall. He was

diagnosed with

> RSS at age 1, and it was a great relief in some ways to know it wasn't the

> unsuccessful breastfeeding or anything else we were doing that was keeping

him

> small. With hindsight his feeding has been relatively good. In fact, his

" lunch lady " at

> his nursery school says he eats as well as most of the kids and faster

than some.

> Doesn't seem like that to me at home with him but who knows, I did request

he be

> allowed to have lunch there since he seems to eat better when other

children are

> doing the same.

>

> I'm afraid I'm uncertain about his weight - could be 24 lbs, maybe 26 but

it's always

> been his height that's been of most concern. I assume his height to

weight ratio is

> OK, as we've been recommended gh treatment.

>

> I was interested and heartened to read of ' height at 15. Can you

tell me what

> his predicted height was prior to gh treatment, and at what age he started

treatment?

>

> Hamish can't put too much in his mouth and swallow without retching and

sometimes

> throwing up. This sometimes happens when he has a cough too, and is most

> upsetting as he obviously loses any recently consumed and precious food.

Is this

> common?

>

> Also, he developed a flat mole on the palm of his hand whilst in hospital

earlier this

> year for a swelling under his jaw. The swelling required a high dose of IV

antibiotic

> and eventually surgery to draw off the infected fluid. We don't really

know what

> caused this. My suspicion is that he had an infection that his lymph gland

couldn't

> handle and it then became infected. The resulting disruption to the

surrounding

> anatomy meant the doctors were not able to tell me whether it was a lymph

gland or

> some other gland (possibly saliva?) that was infected. Our endo is aware

of this, and

> doesn't seem to think it should affect his suitability for gh treatment.

He has asked

> for further advice re the mole. Any comments?

>

> I'd also particularly like to hear from any parents of RSS children in

Scotland.

>

> Thanks.

> Barbara, mum to Hamish 3 ½, 34 " , slight asymmetry.

>

> >

Posted December 3, 1999 · December 3, 1999

Hi Joanne!

Wow 3 1/2 and 38 " that's in the 25th-50th percentile! DId you see that jump to

that percentile after you started GHT? He is definitely tracking " big " for an

RSS kid!

Katy

Posted December 3, 1999 · December 3, 1999

To Katy

CHristian is 3 years and just over 7 months so on my chart he is 1 cm below

the 25th.This is better than I ever dreamed of.Before he started gh he was

not on any centile,in 3 months he was on 0.4th,a further 5 months the

2nd,and after another 7 months on the 9th.In the 19 months he has been on gh

he has grown 21cms[sorry I always forget 8 1/4 '']and about 10 1/2 lbs.Today

I saw one of DR Stanhopes registrars and she said that sometimes RSS

children drop slightly off thier centile when they stop but she still thinks

that he will be no shorter then 5 ft 6''.thats a far cry from the 5ft 1''

predicted height.

joanne

Re: New Member

>

> Hi Joanne!

>

> Wow 3 1/2 and 38 " that's in the 25th-50th percentile! DId you see that

jump to

> that percentile after you started GHT? He is definitely tracking " big "

for an

> RSS kid!

>

> Katy

>

> >

Posted January 30, 2000 · January 30, 2000

Dear Michele

I just like to welcome you (and Lily!) to the list and hope that you can find

the answers to your questions here. I am in Scotland and have a son, Hamish who

is 3 yrs 8 mos at the moment

With regard to RSS traits, the Magic list is as good as any, and you may also

wish to look at the Archive area on the Listserve site. There was quite a lot

of discussion around the 12/13 January under the subject headings of " RSS

Traits " , or " RSS or not " As far as I know there is no definitive test for RSS

and is generally based on characteristics, the main mandatory ones being IUGR,

low birth weight/length, lack of catch up growth, asymmetry (not essential). I

think the only traits that all the RSS children seem to have are IUGR, low birth

weight and lack of catch up growth. Many of the other characteristics are

shared by most of the children, and I believe for a diagnosis, there must be at

least some of the others.

I think your best bet would be to get a referral to a geneticist who can look

for the various traits in Lily with a trained eye. Our experience was that our

GP referred to us to a pediatrician, who in consultation with a geneticist,

referred us to a pediatric endocrinologist at Yorkhill Hospital in Glasgow. The

geneticist made the diagnosis and the pediatric endo confirmed this.

I'd be interested to hear some more about you and Lily and yes please post a

photo on the Listserve site. Have you looked at the others there?

You could also contact the Child Growth Foundation at

2 MAYFIELD AVENUE

CHISWICK

LONDON

TEL: +44 (0) / 995 0257

FAX: +44 (0)

they have a website but no e-mail address - hence my membership has lapsed (I'm

such a cyber junkie - can't stand having to post a letter now!)

Anyway, hope you hear from you again soon.

Best Wishes

Barbara

mum to Hamish, 3 yrs 8 mos, 25lbs and 88 cm (approx)

Posted January 30, 2000 · January 30, 2000

,

I think Barbara said everything I was going to say. I wanted to welcome you

to the list though and echo what said--this is the toughest time but

it will get less stressful and this list helps a lot.

Debbi,

Thanks for looking up Cornelus De Lange. I'll look up Bloom too. Also,

was checked w/ Abby-some traits are similar but the real reason she

was checked was because her calcium was high at the time. Still, given

everything I've learned, I'm pretty confident about RSS. Perhaps Silver

syndrome , but RSS nonetheless.

Kathleen (Mom to Abby--15 mos, 12 lbs. 12 oz, 25 in., not officially

diagnosed RSS yet)

New Member

>From: morgmi@...

>

>Hello - I am Michele, mother of Lily 20 months and I was introduced to this

list by . Lily was an IUGR born prem. From the time I was 12 weeks

pregnant I was told Lily was not growing properly - her arms were too long

and her head too big. Since birth she has been an FTT. We are in the UK

and I'm not sure how our growth charts compare to the USA. At birth her

head was between the 2nd-9th centile but her weight was off the charts below

the 0.4th. At 19 months her head and height are just below the 0.4th and

her weight is significantly below.

>

>Lily is breastfed as she refuses to feed from a bottle/cup etc. Lily is

lively, energetic and bright but difficult to feed (she can't manage lumpy

foods). I'm told her airway is small. The hospital haven't mentioned RSS

to me but when I recently attended hospital with Lily for a barium swallow

they also took a hand xray. I have looked at the Magic site (as suggested

by ) and can see some of the signs of RSS in Lily but I realise that

that may be true for all children. We are also waiting for the results of a

chromosome test prior to referral to a feeding clinic (our appointment is in

May!). I will obviously raise RSS at my next appointment. Can anyone tell

me if there are any signs of RSS that appear in ALL RSS children? If anyone

would like to see a photo of her please let me know. What tests should be

carried out to detect RSS?

>

>I realise I may be on the wrong track and don't mean to be dramatic, just

informed.

>

>Thanks for your help.

>

>Michele

>

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

Posted January 30, 2000 · January 30, 2000

,

From what I know the parents height has a direct affect on the RSS child's

final height. In fact, Dr. H uses the parents' heights to come up with a

goal height for enacting her protocol. I don't think long arms are an RSS

trait but the ears, chin and lips are. Good luck in your search.

Kathleen (Mom to Abby--15 mos, 12 lbs. 12 oz, 25 in., not officially

diagnosed RSS yet)

Re: New Member

>

>Barbara

>

>Thank you for your message. I will post a couple of

>photos of Lily tomorrow (if that's ok with no dx yet).

> Lily was 1.4kg at birth so was certainly low birth

>weight! At her last weigh in she was 14lb but I am

>sure she has put on a couple of lbs since then as she

>has been on an eating spurt and feels heavier. The

>RSS signs I have noticed ... Lily has got a thin top

>lip, slightly sticking out ears, long arms and a small

>pointed chin (plus gorgeous dimple). The feeding

>clinic appointment we have in May is at Barts. Lily

>and I live in a small village on the Essex/Suffolk

>borders. I have been told by the hospital that Lily

>will be very petite. I am pretty short myself. If

>Lily has got RSS would the fact that I am short (5ft)

>as was her father (5ft 6') mean that Lily would be

>especially tiny or do RSS children simply have a

>maximum height? I have a feeling that may not be an

>easy question to answer.

>

>Thanks

>

>Michele

>

>____________________________________________________________

>

Posted March 13, 2000 · March 13, 2000

a,

Welcome to the list!!! You've found a GREAT group of people. I have a 2yr

old, not yet diagnosed, and have learned alot from everyone here. Where do

you live? Are you planning on attending the MAGIC conference in July? Talk

to you soon,

, Mom to (almost 2, RSS?), and (4 3/4)

Posted March 13, 2000 · March 13, 2000

Hi ,

I know I couldn't wait to get home today to check my email. How do you spell

relief- S u p p o r t. Long awaited.

Thanks I feel welcome.

a

Posted March 13, 2000 · March 13, 2000

Hi ,

I live in Pinellas County, Pinellas Park, Florida. I think the conference is

in Virginia? I don't think I can attend this year's maybe next year.

a

( 4 1/2)

Posted March 13, 2000 · March 13, 2000

a,

Welcome aboard! Just a warning- this list can be addictive!! Ha Ha!

- Mom of (13mons) & (3yrs)

Posted March 13, 2000 · March 13, 2000

Hi a,

Welcome to the list it is a wonderful source of support and information.

And its even good for a few laughs( not to mention cries).

To my friends,

Peace and Prayers

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

Posted March 13, 2000 · March 13, 2000

Welcome, a

I'll start off with a question for you. How much did weigh when he

started Ginotropin? my almost 4 year old son weighed in under 20

pounds last week and is if I recall right 34 inches tall.

I didn't mean to start off with the 20 question game, but your son's

size sounds like a target size to me. If you don't mind being used for

target practice.

Danna

New Member

> From: booboooww@...

>

> Hi,

> My name is a and my husband Ron and I have a son () who was

> diagnosed with RSS two years ago. is 4 and 1/2 years old and

> weights in at 26 lbs and 36 inches tall. He just started Genotropin

> last may and has grown 4-5 inches and gained 3 lbs. He seems to be

> doing better, but, we are still faced with the continued should we's

> and shouldn't we's. Along with other trial and tribulations of

> attending a PRE-K and having doctors and friends and family of whom

> are unfamiliar or uneducated on what RSS actually is. I am just now

> learning more thanks to MAGIC and from reading some of your postings!!

>

> I am excited to be able to talk to someone who finally understands.

> Or several someone's.

>

> Looking forward to corrosponding.

>

> a

> (mother of )

>

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

> GET A NEXTCARD VISA, in 30 seconds! Get rates as low as 2.9%

> Intro or 9.9% Fixed APR and no hidden fees. Apply NOW!

> http://click./1/936/0/_/229381/_/952955616/

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

>

Posted March 13, 2000 · March 13, 2000

Hi a,

So glad to hear from you. I also have a 4 1/2 year old son, . He

was born in September, 1995. He weighs 28 pounds and is 36 1/2 inches tall.

How similar. We will probably be starting growth hormone early summer. Did

you have his GH tested? How does he handle the shots? Have you heard

about the once a month shot? He grew 4/5 inches that's great!

Talk to you soon.

Judy ( 4, Cody 8 and Zachary 10)