Re: Re: To Jeanie - Welcome

[Guest guest]

Thank you. How much is the convention? I live in a very small part of the

world. Wellsville, NY. It's a pinpoint on the PA. border. about halfway across

Southern New York. Please tell me more about RSS. I would love to know

specifics. What do we have to look forward to? The Dr. that diagnosed him

didn't have much to tell. My pediatician didn't either. I feel LOST.

wrote:Hi Jeanie!

Been there - now I can help by saying don't panic - we are here to

help! My 33 month old daughter is SGA (small for gestational age)

with many many characteristics of RSS excepte the triangular face.

Either way, treatment is the same. We are from MA...where are you

from? There is probably a family near you too...Let us know about

your child...EMerence was born IUGR (intrauterine growth

restriction) via emergency c section at almost 37 wks - 4 lb 6 oz

16.25 and she was a moose compared to most of the kids here!!

She is now the queen bee/self designated empress of the world

(complete with hands on hips, foot stamping and attitude). She is

smart and funny and short. She will be 3 in February and we are

hoping to start growth hormones by then.

Plan ahead and try to come to Chicago next summer - best investment

in your child's future you will ever make!

, mom to almost 6 and Emerence 33 months 22 lbs 32 "

>

> Jeanie,

>

> I am not doing the official greeting since that is Sheldon's job

> these days, but I just could not go without responding to your

> email. Look! You DID do something right! Your message came

> through! It probably had to be approved by Ken before you could

> start posting right away. He's the moderator and he rules with an

> iron fist.

>

> I am one of several Jodis on this listserve, but only two of us

> spell Jodi correctly. I have a 17 year old son, Maxwell, who has

> RSS and a 20 year old daughter who is adding more gray to my head

> than I care to admit. She does not have RSS, however. If you

have

> not already noticed, I post a lot. I do my best to help whoever

I

> can.

>

> That being said, tell us more about your son. I'm sure you are

> partly devestated and partly relieved to have a diagnosis. This

> group of people is the best resource and the best source of

support.

> There is also the MAGIC Foundation who sponsors a yearly

convention

> in Chicago. Check out their website at www.magicfoundation.org.

>

> Once you tell us more, we can be more specific with information to

> share with you. HOWEVER if you have not been warned about the

> possibility of nighttime hypoglycemia, consider this to be it.

Many

> of our kids have that and their parents have not been told. There

> are a couple of ways to check and simple things to ensure it does

> not happen. But I don't want to overwhelm you right now.

>

> Please also tell us where you live. Many of us take our kids to

see

> Dr. Madeleine Harbison in NYC. She is the guru of RSS in the US.

> There are only two other doctors in the world who know as much and

> they are in Europe. Dr. H, as we call her, has over 200 RSS

> patients and has come to our rescue many a time.

>

> Again, welcome and I look forward to hearing from you soon.

>

> Jodi Z

>