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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

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[Guest guest]

Kathleen,

Hi! I think I remember your saying that Abby doesn't

have asymmetry, I think, too that that's

Syndrome, not Silver. I'm not trying to correct you,

I'm checking myself--as I was recently reciting this

info to someone. Do you remember?

Also, the Bloom is not a good one, I believe if I

remember correctly, the child develops luekemia and

other cancers. Jake was thought at one time, too, to

have Stickler Syndrome--that's a bad one, blindness

and deafness and muscle deteriation all by the time

the person is in the 20's. I had to check this one

out at the library (before we were on-line) about 3

yrs ago.

I think I recently checked out when someone

mentioned it--but now I don't remember the charac's.

It's amazing how many different little things/parts of

the body can be affected by the differences in genetic

makeup and when those regular genetic directions go

askew. Hence, the human race, I guess. We are all

are made differently anyway, blonde hair or black

hair, fair skin or dark skin, round face or oblong

face,... short or tall. Oh, I guess that's how this

whole thing started! Anyway, I've gotten too deep

(it's late). Well, variety IS the spice of life. I

think that's my 'signature', but I haven't completely

decided yet. And, you all think I'm nuts, so I'll say

goodnight now!!

Goodnight now, Debbi, mom to Jake (who is holding fast

at 27 lbs., yea!!), 37.5 " and will be 5 on Feb 20th.

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[Guest guest]

Hi Dana,

I don't mind questions. was 3 pounds 14 oz. He is 26 lbs and 36

inches. (that is according to his pediatricians scale). He goes to

Endocrin. every 6 months now. He was 32 inches and weighted 23 lbs when we

first started growth hormone in May of 1999. He seems to be doing well on

the growth hormone.

a

[Guest guest]

Hi Judy,

(41/2) Gets his shots nightly. At first it was very hard for me. They

gave me the Genotropin Pen. It is easier than a syringe. I only give them

in the front of the legs and the hiney!!. I started giving them on the hiney

when he was asleep. Then he started to wake up and would just sit in the

corner of his bed staring at me like I was the big bad wolf. Then I started

giving him a bandaide before hand and telling him he could give me a shot

after wards (i took the needle out first) that seems to be working now. He

still gets a little excited, but, the bandaide usually cures it. It is easy

for me now. Although still mentally hard. I know it is what is best for

him. It took me a year to decide he needed the GH.

a ('s mom)

[Guest guest]

Judy,

Oh yeah, was tested for the GH and his level was in the low end of the

normal range.

a

[Guest guest]

Hi ,

had his first growth spurt in the first three months. He grew over and

inch and gained a pound. It is hard to keep up with the measurements because

the endocrin. and pediatricians is different from mine. One time he shrunk

2inches and lost 3 pounds in 5 days (difference in doctors scales). But, it

has helped.

a

4 1/2

[Guest guest]

-----Original Message-----

>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.

>

>a

>(mother of )

Hi a and Ron,

Welcome to the RSS-Support list! I must say, I'm really impressed with

's growth on GH! Our son, Ross, just started GH (also Genotropin) at

the end of December and I haven't seen any growth or weight gain yet. How

long was it before you started to see some " results " ? Ross just turned 6

and is approx. 39 1/4 " and 30 lbs. (by my measurements - it's never the same

at the doctor's office!). I also wonder if his dosage needs to be

increased, which may be determined at his next visit. Again, welcome - look

forward to hearing more from you!

Dennise

[Guest guest]

I was married to an alcoholic, abusive man for 20 years and had 2

daughters. My oldest one had a lot of problems from about age 13

but we didn't connect them to a mental problem. She had a child at

age 16 and at age 17 married a man who was very like her father had

been. At about age 21 she became very withdrawn and

depressed...accompanied by suicide attempts, self mutilation and

wild mood swings which could happen many times in one day...she and

her husband separated and her condition worsened. After she had

lost about 80 pounds from not eating I had her admitted to the care

of a psychiatrist where she was diagnosed with BPD, PTSD, OCD, and

chronic depression. At that point she was, for all intents and

purposes, dysfuntional. I quit my job as a nurse to help her and

her children. I've been with her through many broken relationships,

I've had her tell me that she was waiting on me to leave her because

no one could stay around her...she goes between telling me she

couldn't live without me to telling me to leave her house. There

are times when she screams and asks me to take her kids away so she

can kill herself because we'd all be better off without her...there

are times when she goes to the stores and shops for things that she

totally does not need...there are times when she tells me that the

pain inside is so bad that she can't bear it. I've read all I can

find on the subject of BPD and she fits into every catagory that's

listed. In the beginning I " walked on eggshells " watching every

word I spoke for fear of setting her off because I never knew what

would...but I've stopped that. But it's still one of the hardest

things I've ever done in my life to be here for her and yet keep my

own mind intact. Therapy and medication have helped her immensely

but she still has days when it's very difficult to deal with her.

She loves her kids and she explained to them that a person's brain

was supposed to work a certain way and sometimes hers didn't work

like it should...so she has maintained a good relationship with them

and they seem to understand that explaination. I know that it's

very difficult for me to be understanding during her episodes and I

have to wonder what impact it might have on her children. I pray

that one day her symptoms will reach the place where she can control

them and herself but sometimes I wonder if that's even possible. I

think I can safely say I don't really understand the hell that

living the way she lives must be and the pain she lives with...but I

DO know that it's a kind of hell living with the BPD too. I have

never had anyone to discuss these things with because most people

tend to think that she's simply spoiled and that I'm the one who

enables her to be the way she is. I'd like to become a part of this

support group because if there is any thing anyone can tell me to

help her or to just let me know that it's ok to feel like I'm in a

no win situation where she's concerned...I can use all the support I

can get!!! Thank you.

[Guest guest]

Hello and welcome. I was wondering, what is my daughter doing there?

You've just described my situation to a " T " . The book, SWOE will help you. As

you cannot help her. I have to keep reminding my self of the three " C's " .

You didnt Cause this, you cannot Control it and you cannot Cure it. Only she

can help herself. She needs therapy and meds. You need to keep your boundaries

set so as not to be manipulated. The problem I have is my daughter is 17,

not of legal age to be sent out on her own. Shes like a 10 yr old in a 17 yr

old body. Took me the past 4 yrs. to work on myself to learn not to become a

victim of her ploys. It's not easy. I suffer from severe eczema on my hands

and legs from the stress. A new affliction for me, which I will have to learn

to live with the rest of my life. You are not alone, these posts should shed

some light as to what to and what not to do with your daughter. Looks like

you are headed in the right direction, her not living with you and you not

jumping to bail her out each time she calls.

Keep up with the boundaries and dont enable her. Hope this and other posts

will help you. Glad you found the site, took me two years on my roller coaster

ride before i found it. It has been enlightening to say the least, in that

at least I know that I am not alone in this. Good luck. Debbie