Re: RSS and my daughter

[Guest guest]

Hi, Sangeeta. Welcome to our group.

Where do you live? Have you checked out the Magic Foundation?

(www.magicfoundation.org) They have a division just for RSS/SGA and

it is a wonderful source of information. There is even a convention

every July and it's like a huge family reunion - even if it's only

your first time! I've been going for 4 or 5 years now and both my

son (16, RSS) and I look forward to it.

This is a great group of people. Most of us have never met, but we

are like one huge family. We don't always agree, but that is okay.

We try to support and offer advice and just listen when things get

frustrating.

If you tell us more about where you live, then perhaps someone on

this listserve will be able to recommend doctors to you. Your

daughter should be monitored by an endocrinologist at best. She

must be watched for hypoglycemia, signs of early puberty, monitoring

of bone age and checked for assymetry, among other things.

Just telling you that your daughter has RSS and there is nothing

else to do is just not fair to her or to you. I have seen too many

children and parents who were told the same thing and then the child

becomes a teen, is only 4'7 or so and the parents regret that

nothing was done to help the child grow.

I understand your desire to seek out alternative meds. You SHOULD

explore all of your options and educate yourself. You owe that to

yourself and your daughter. But please don't listen to your

pediatrician and give up on seeking other medical interventions.

You will be glad that you became more proactive. Trust me on this.

Jodi Z

[Guest guest]

Hey sangeeta, my name is kim and i'm one of a few rss adults that post on the

listserve, i just wanted to add my welcome to you and say that you've found a

real oasis i=of information and support on this listserve. i weighed on 10lbs at

26months , never took ght (as it wasn't synthetic material back then) feel free

to email me on the list or privately anytime.

Warm hugs

sangeeta_sudha wrote:

Hi all :

This is my first message to this support group. I have a 2yr old

daughter 'Nannie' who was diagnosed a RSS child about a year ago. She

is 18 lb at age of 2 yrs (just turned 2). I don't see any special

doctors for her and her pediatrician doesn't do anything different

with her. He doesn't care about her weight gain, since she is RSS and

that is expected for her.

What should I be doing to help my daughter grow better ? Anyone

pursued any alternative therapies and might have helped in any way ?

What should I be doing to increase her weight ? Can we give growth

hormone , if so from what age ? Did anyone try natural GH ?

Please advice.

Regards,

Sangeeta.