Re: Re: can anyone help?

[Guest guest]

Hi !

More people have responded than I thought, I so appreciate all the support!!

I will definitely be joining Magic, and will attend the conference. I will

surely get the dvds as well. I wondered a lot about how different or similar the

feeding issues would be with the more mild cases, because she has few features,

I was hoping to deal with less of the bigger issues these kids have. Her face

and head look mostly normal, aside from a somewhat prominent bridge across her

nose, they considered that underdeveloped mid-face, as if the cartilage for the

nose didn't finish, making the bridge appear bigger. Her face and head is small

along with her body, they diagnosed her because she has a 1cm difference on her

legs, a cafe au lait birthmark, and her 2nd toe is bent, her 3rd toe looks out

of line slightly, and she has the turned in pinky, and of course she's way too

small!! I just wish everything was more cut and dry!! With exactly what she

needs!!

wrote:HI!

Welcome! YOu have found the right place! I have an almost 6 year

old son and my daughter Emerence is 31 months, 22lb and 32 " . She is

diagnosed small for gestational age but with a whole lot of RSS

features, but most mild and therefore our geneticist calls her RSS.

Either way, same thing pretty much! She is an " eater " and has not

had a feeding tube. However, I do worry constantly about getting

enough in. At 19 months Emerence weighed 18 lb 7 oz and was 28.8 " .

I think your daughter is a bit underweight for height when I compare

the two.

Anyways, where are you from? Someone here will be able to recommend

you to a good endocrinologist (this will be the person who will most

be able to help and treat your daughter). If you are near NY you

are lucky and can go see Dr. H the dr. who sees about 125 RSS kids

plus all the rest of us at the convention every year. My best

suggestion for you is to join MAGIC ($30) nd then order the 6 dvds

from the past two years convention. the information will help A LOT.

Good luck, love to hear from you! By the way, Oct is WALK for

MAGIC month so you may be able to meet a bunch of parents and kids

at once if there is a walk near you.

from Massachusetts, mom to and Emerence

-- In RSS-Support , " cjajdmalcolm "

<cjajdmalcolm@y...> wrote:

>

>

> Hello,

> My name is , I learned of my daughters diagnosis last

> month, and a few days ago found this site, and thought I'd join

the

> chats! Her name is Dasia, 19 months, 16lbs, 29in. My greatest

> concern is, I've heard so much about the feeding tubes, and her

> devel. ped. didn't mention it, I learned how common it is on-line

> after I got the diagnosis, and the nutritionist I've been working

> with wasn't thrilled about the idea when I brought it up to her

> recently. Yet I know Dasia definitely has plenty of bad days, and

> inside I'm terribly afraid of compromising her final height, or

her

> brain development! The nutr. says she should be getting 850

> calories, and I'm quite sure that rarely happens, if ever. Is

there

> anyone with the same aged child who could say how much their child

> is getting? Or someone who remembers this age? I have to blend her

> food, all high calorie, high fat foods, and on a good day she'll

> finish two 4oz containers, one usually at lunch and the other at

> dinner. I add heavy whipping cream to her milk which has carn.

> instant breakfast, and on a good day will finish an 8oz cup.

She'll

> have a little bit of food for breakfast, and a couple bites of

> different things I try to offer her during the day, and that's

> pretty much it! The only thing that has kept me from getting

overly

> worked up about it all, is the fact that she doesn't look really

> skinny, she has a little double chin, and looks pretty healthy to

> me, with what looks like a healthy amount of baby fat, certainly

not

> as chunky as I would want, like my other 2 were! She just looks

like

> a much younger baby, and has a very small frame. The logical side

of

> me thinks her body wouldn't be storing any body fat, if the energy

> was intended for growth or brain devel., or maybe I'm just in

> denial! Anyone?

[Guest guest]

,

As long as I'm typing I'll hit a few of these questions. Most of our kids

have reflux. Many also have VERY delayed gastric emptying as well. Many

times when a g-tube is placed they will do a triple procedure to try and fix

these problems as well. Chronic constipation is also a huge problem most

likely related to the delayed emptying. It is VERY important for our kids

to poop! If it doesn't come out, they don't want to eat. (Would you :-))

It is great you are able to control this problem! Many of our kids also

have PT, OT and/or speech for delayed gross and sometimes fine motor skills

and the shape of their mouths contribute to the speech problems. Feeding

therapy is also great to ensure variety of foods and textures.

Dayna

_____

From: RSS-Support [mailto:RSS-Support ] On

Behalf Of cjajdmalcolm

Sent: Wednesday, September 21, 2005 11:03 AM

To: RSS-Support

Subject: Re: can anyone help?

Hi Chrissy,

I do have a great devel. ped. who is also a genetecist, who sees

at least 2 other kids with RSS, and was referred to me as the best

in the state. I have also been referred to an endo, who was

recommended highly by another lady here in Indianapolis, IN whose

little girl has RSS. I can call her and get a GI doc I'm sure. I'm

just learning that I need one from all of you! One question I do

have about that, is there anything that can be done about those

absorbtion issues? I just don't want to put Dasia through any

unnecessary testing if there isn't a remedy. She never throws up or

complains, she's very happy, and active, and I never would have

suspected any digestive issues. She does get constipated, but I

thought that was because I feed her a lot of dairy, because of the

high calories and fat in it. I've since added more fruit juices, and

refried beans, and that seems to help. Other than that, she seems

completely normal in that area, she has regular, normal bowel

movements most of the time, 1-3 a day, and will occasionally skip a

day. She's been in PT for her low tone, and just the other day took

her 1st 4 steps! She was delayed with every gross motor skill, and

she has OT for getting her on solid table foods, she only will eat

blended. Some certain other foods too, Cheese Puffs, or a donut

occasionally. She's getting orthotics on Fri, for more stability to

walk, she has joint laxity, causing her ankles to turn outward. I

think those are the only noticable problems, aside from her size.

Are there usually unnoticable GI problems with these kids, or are

there signs, and are then referred to a Dr? Oh and she'll be getting

evaluated for speech therapy this week, which I'm sure she'll need.

She only says a few words, she's sopposed to have more at 19 months.

Thank you!

Avery 6 Jaden 3 Dasia 19mo RSS

> ,

> You basically just discribed the first year of all of our lives!!

First

> things first you need to find a doctor in your area ( ur from

where? ) that has

> experience with RSS. It doesn't matter what the doctor's

specialty is because

> they will refer you to the best docs in ever field. Our daughter

Madison is

> 4 and we just now finally got all her doctor's squared away. As

we know

> failure to thrive ( or FTT ) is expected of these kids, the

treatment isn't the

> same for a child that is physically and mentally healthy with

just FTT. Our

> children require much closer attention and their care shouls only

be by a

> doctor who is willing to listen to you and try new things.

> Does your child have any other issues that you may be aware of??

Since she

> has confermed FTT and RSS you may want her GI evaluated more in

depth. Most but

> not all of these children have sever gut dismotility. this will

require a

> milk scan to diagnosis. This is where the rate at which food is

digested is so

> slow.

> Any endocrin issues??

> I could go on for days so in short how about if you fill me in on

what you

> DO know about your child's health and we can go from there. Where

are you

> from again???

> Chrissy

> mom to....

> Louis 6 Madison 4 RSS Shane 2 11 1/2 mon

>

>

>