Re: Lots of Questions from Oklahoma!

[Guest guest]

Hi I am still hunting for anyone in Tulsa, Oklahoma or the surrounding area

or states to meet. It would be really great to talk with someone in this part

of the US that has already been through some this already! This is all so

new and confusing. Is there any books out there that speak specifically about

this disorder. The day our pediatrician came to the conclusion that RSS was

a definite possibility for our 2 y.o., Hannah, was the same day that our 3

y.o., Braxton was diagnosed with Autism by a developmental pediatrician in the

same building. It was only by the grace of God that I made it home in one piece

that day. We have since taken her to a pediatric genetic specialist Dr.

Mogadham who also believes that she has RSS. Dr M. ordered some bloodwork while

we were there to rule out some other things and will be sending us to an

endocrinologist, ordered a ct and some other stuff. She still has a large soft

spot

and her head is in the 95percentile even though her ht and wt are not on the

charts. Is this normal for her head to measure larger than average size?

I instinctively was giving her at least 4 cans of Pediasure because I did not

take her off formula until she was 2 yo. She is now 22.5lbs, and 32 inches

she will be 3 in 3 1/2 months. Is this big for a RSS child and is there any

way I can tell aprox. how tall she will be? We did a hand xray that showed her

bone age to be 18 months-is this common and is she safe in a day care around

kids her own age? Thanks in advance to anyone kind enough to answer any of my

questions! - (Mommy to Hannah and Braxton)

[Guest guest]

Thanks Jodi for the support! And, No you haven't confused me at all. I was

wondering about that Pediasure thing. It is very sweet and I think that is

why she loves it so much. Now if you don't mind here are some more questions.

What does SGA stand for? How do I get an appointment with Dr Harbison,and

what kind of Dr. is he or she. and where and when is this conference and how

much

is it to attend. I would really be interested in getting the deatails to

see if it is financially possible for us to attend. How rare is this disorder

and do many people with RSS children come to this conference? I would really

love to meet some of you! It really sounds like many of you have been through

so much (do kids get through life with this disorder without any significant

health problems-is that possible?)

I'm sorry to bombard you with so many questions at one time! Thanks just for

answering what you already have- you are very kind! (Mommy to Hannah

and Braxton)

[Guest guest]

Jodi or anyone - Sorry one more question. I am wondering if it would hurt

to put her back on another baby formula? Instead of the Pediasure or would

just regular whole milk be better. She is 2 1/2. Or do you have any

suggestions on other less sweet formulas? Thanks, (Mommy to Hannah and

Braxton)

[Guest guest]

,

It sure sounds like you are on the right track with RSS. I know too

well how lonely and scared you can feel.

Have you checked out the MAGIC foundation website? There is a lot of

info there about RSS. (magicfoundation.org) There is also a

convention coming up in July, in Chicago, and Dr. Harbison, an expert

on RSS, offers free consultations for RSS/SGA kids.

RSS kids DO have large heads for their tiny bodies. They are

notoriously poor eaters and require a higher calorie diet. The only

thing you are doing that might want to be changed is the Pediasure.

Dr. H. has told us that it is full of so many empty calories provided

by sugar that it is not really good for our kids. We are suppposed

to focus on complex carbs and other, less sweet formulas to boost

them. At this point, you can try adding cream, butter, oil and such

to foods to boost the calories.

Please be aware that RSS kids are prone to hypoglycemia. Most

doctors are not aware of this. You should provide lots of snacks

that have calories and complex carbs. Too much sugar leads to

insulin resistance, a new finding for our RSS kids.

Okay, now I have probably totally confused you. I'm trying to

support you, but I have probably opened up a lot of questions for

you. Just keep reading and posting and you will learn a lot. I

think that so far you have done a great job!!!

Jodi Z.

Mom to Max, 15 years, RSS and Jenna, 18 years, no RSS

[Guest guest]

The conference is in Chicago the weekend of July 22-25. There are

hundreds of RSS/SGA families who attend, as well as families with

kids with other growth disorders. The RSS/SGA division has the

largest turnout, though. (SGA stands for small for gestational age.)

If you check out the MAGIC website, you can get all the details

there. The hotel is $89/night and the convention costs are about

$100. Then there is transportation and food. Just check it out.

It's really a great experience.

As for Dr. Madeleine Harbison, she is an endocrinologist in NYC.

She is currently at New York Hospital/Weill Cornell Medical Center,

but is moving to Mt. Sinai Hospital in mid-May. If it is possible

to see her, it is worth the trip. You can call her office now at

and they will schedule a " dummy " appointment which

would have to be changed once she gets to Mt. Sinai, but at least

you'd be in the system.

Darn. I forgot your other questions. I'll check your post and

reply if I can answer them.

Jodi Z.

[Guest guest]

,

I am a 21 year old adult (female) with RSS. I just wanted to give

you peace of mind that it IS possible for kids with RSS to grow up

and lead very normal, typical adult lives. I am currently a junior at

the University of Colorado and am planning on going to law

school after I complete my undergraduate studies next May. My

life is very much like those of peers. In fact, my life is so typical

that I would hate to bore you with the nitty gritty details. All of the

other adults with RSS that I know are also completely

functioning, typical adults. Several of them are married and a

few have children. All of them either attend school or hold down

jobs. The early " RSS Years " can be very trying on both the parent

and the child, but things do get better! Good luck with your

daughter and I hope to meet you in Chicago this summer.

Please feel free to contact me either personally or publicly on the

list with any more questions that you think I may be able to help

you with. My email address is hillary.jorgensen @colorado.edu

(leave the spaces out when you type the address).

Best of Wishes,

Hillary

21, RSS

60lbs, 4'1 " (without growth hormone)

[Guest guest]

First of all I just would like to say you all are an amazing group! You are

all so helpful and I feel truly blessed for having found you all! I really

mean that with all sincerity. I am feeling less lost and anxious about RSS. I

think that it is great to see people like Jodi Z. who in the midst of her own

personal battle with the health of her beloved son Max was unselfish enough to

take time to answer questions for someone that is new at this, Sabina for

the very helpful info on the Pediasure thing, etc., And Kate and Hillary who

wrote just to help me see farther down the road than the now tiny little girl

who at this very second should be in bed but is staring at me with those

beautiful big brown eyes. (By the way Hillary I hope Hannah has your spunk and

drive!) And Jodie who took the time to send me a personal email to say I could

call

her. Thanks to all of you, I feel less lost and less alone. Your kindness

will not be forgotten. With much gratitude- Jordan (Mommy to Hannah 2

1/2,

and Braxton 3 1/2). PS I can't wait to meet you all in Chicago!

[Guest guest]

> We have since taken her to a pediatric genetic specialist Dr.

> Mogadham who also believes that she has RSS. Dr M. ordered some bloodwork

> while

> we were there to rule out some other things and will be sending us to an

> endocrinologist, ordered a ct and some other stuff.

We used to live in Tulsa, and we used her as well! She is GREAT..very

helpful, and will talk to you when ever you have questions, she never hesistates

to

call you right back and is never too busy!

Sorry we don' t live there anymore, we just moved to Las Vegas!

Jen, mom to Xavier

[Guest guest]

Dear ,

I am kind of late getting in on this one, but here goes. Someone on

this site suggested an idea for us and this is what we are doing for

, who is 24 months old. We are mixing regular 'older baby'

formula into whole milk for him. This has the same calories as

Pediasure without so much sugar. It also has the extra vitamins, etc

from the formula. We also add a bit of baby cereal into it just to

boost the calories and nutrition that much more. We only give him

this drink after lunch and after dinner/before bedtime so that he

will not be too full to eat anything because unlike lots of the kids

on here, he does not eat with great enthusiasm. We put it in an 8

ounce sippy cup and let him nurse it along. This is also MUCH less

expensive than some of the other solutions, like pediasure. It might

not be an adequate nutritional source for your child so it is

important for your doctor to approve it, but our doctor said that

this is OK for .

Conny, great-aunt to , 24 months.

> Jodi or anyone - Sorry one more question. I am wondering if it

would hurt

> to put her back on another baby formula? Instead of the Pediasure

or would

> just regular whole milk be better. She is 2 1/2. Or do you have

any

> suggestions on other less sweet formulas? Thanks, (Mommy to

Hannah and Braxton)

>

>

>

[Guest guest]

What we did for a long time was use carnation instant breakfast.. Also after

Lunch, Dinner and before bed.... So he would eat, what little bit he would

eat.. It is cheaper then Pedisure....and tastes better....

Orlando Florida

" Life should not be a journey to the grave with the

intention of arriving safely in a pretty and well

preserved body, but rather to skid in broadside,

thoroughly used up, totally worn out, and loudly

proclaiming '*WOW*! What A Ride!' "

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[Guest guest]

Connie-Thanks for the great idea!

We are supposed to have an appointment with an endocrinologist soon so I

think I will mention this to the Dr when go. Thanks for the idea!

(mommy

to Hannah 2 3/4 , 22 1/2lbs 32 in and Braxton 3 1/2)

[Guest guest]

Jeanine-

Thanks for the response- We are on WIC too. It saves us three hundred

dollars a month! I am so thankful for it!