Re: EVI/Devel. & some rambling by Jenn

June 6, 2004

Mimi - Many RSS children hit their milestones just fine (since the

range in age for milestons can be quite broad). Often times the

children whose weight is the lowest have the hardest time --

especially when their head is larger. 's head circumference

was in the 75th percentile, and her weight was about 1 standard

deviation (meaning one line) below the 3rd percentile. So the

toughest part is keeping the big head up, but somehow she did it.

She walked at exactly 14 months. Still within the normal range.

Another parent and I were just talking on the phone the other day.

She had stopped using this listserve, because, as she felt, her

child didn't have all the problems that so many kids on the

listserve have. It brought up a good point, and that is this.

Often times when an RSS child is growing well, and isn't having a

lot of issues, life just rolls along, and the fact is that parents

don't often need to vent, or ask questions, or use this listserve.

So sometimes it is the parents of children who have the hardest

problems that stay on the listserve and active in MAGIC. Her

concern that she voiced was whether or not " new " parents to the

listserve might get a distorted view of what life with RSS is like,

if they only heard about the problems on the listserve.

I had never thought of that before, so I am typing it here. Because

the fact is that many RSS children do not have GI issues or at least

their GI issues are not causing major issues, most RSS children do

not have academic issues or learning issues, many RSS children eat

well enough that they can gain weight albeit slowly, many RSS

children hit their developmental milestones appropriately.

Am I making sense here??? I am one of those parents whose daughter

is coasting right now. Anyone who meets her (and isn't a geneticist)

would never guess that has any genetic disorder. She looks

like any other 8 year old, albeit tall and skinny. I stay with the

listserve for two primary reasons -- one, because every day I am

reminded that people I have never met in my life (and some that I

have met only once at a convention) understand more about my life

than my closest friends in my own town.... and second, because at

other times in my daughter's life, I depended on MAGIC and this

listserve for help and sanity, and you all were there, and I feel it

is my responsibility as the parent of a child with a rare disorder

to now be there, when I can, for parents who may be in the same

position I once was.

I thank God every day for all of you. Many of us are " coasting " now

in the lives of our own RSS children because of the help we have

gotten from MAGIC and from other RSS parents. I pray that all of

you will someday get to " coast " through life, going through days

without even remembering the word RSS.

Lots of love. Salem

> Hi all!

>

> I have some questions about ECI & development. I have met with

them

> twice this week and I am really confused. So far my son is

> developing " normally " and reaching milestones..he can hold his

head

> up steady, push up when on belly etc. They told me that even

though

> everything was OK now it would still be good to be in the program

> just in case he has any delays in the future. I have read alot of

> the posts and many of you have mentioned that your kids didn't

reach

> milestones on time (walking, talking, soft spot closure). Does

> anyone have a kid with RSS that didn't have delays? Also, anyone

who

> would like to share expierences with ECI...that would be great.

>

> The nurse that came out and did the eval said that his

pediatrician

> put " failure to thrive " on the referral. No one has mentioned this

> to me before so I really don't know what that means..his doc has

> been telling me that he is gaining ok, just slowly. Most RSS/SGA

> babies are below the 5th percentile right? When the nurse plotted

> his growth on her chart he is below 5th on height and below 5th on

> weight but his height to weight ratio is 75th percentile!! Can

that

> be right?

> At our 4 month check up his pedi mentioned that Isaac would be a

> candidate for GHT..how old are the kids when they start this?

>

> I apologize for the long post..thanks in advance for any

> advice/feedback.

> Mimi (mom to Isaac 4 mos..RSS?, hypothyroidism)

>

> P.S.- We are going to convention and I am debating on taking the

car

> seat/ carrier. I hate to have to lug it around..can you use those

on

> shuttles and buses? Seems like a silly question but in Texas we

have

> public transportation but it is really not used often. (I have

never

> been on a bus!)

June 6, 2004

Hello,

I have to say as a very new member whose daughter has not been given a diagnosis

(although she was IUGR, 4 lb 6 oz at birth) with RSS as a possibility, this has

been great for me. Personally, I am one of those people who wig out for about 3

hours before I go into action mode and get information any which way I can.

This list serve has really helped. Our level 2 ultrasound specialist (who we

were seeing as a high risk because of a lost twin, ripped placenta and 2 vessel

cord) picked up that Emerence might be a " littleperson " at about 20 weeks along

(really, I have to give the man lots of credit). It didn't help that I went

home that day and my son, for the first time in months, asked to see Snow White

and The Seven Dwarfs and that I couldn't sleep that night and got up at 2:30 am

and my husband (who is from Chile) had left the tv on a Spanish station he

rarely watches and it was a show on dwarfs! We were dealing with this way

before she was born and we feared she wouldn't even be born (I was having

nonstress tests almost every day for the last 6 weeks before she was born). We

even figured if she were going to be small we woulc pick a special happy middle

name - we chose Alegria which in Spanish means happiness or joy. So for us, her

having RSS will be sad but really she is going to be small with or without a

diagnosis but we are just so happy she is alive and doing well! She fits a lot

of the physical characteristics of RSS but actually eats and loves food - she is

just small so she can't eat that much at once. She has been getting OT (in

addition to her PT) to help her transition as she has issues with chunkier foods

etc but we are getting there! I thank everyone here for posting because I have

learned a lot of what might (but not necessarily) be down the road so I am going

to be watching and prepared for anything that might come. I think you all have

shown great attitudes towards each other and to me (the newbie).

Thank you - I am looking forward to meeting (hopefully) some of you at the

convention!

, 4.5, Emerence (SGA RSS???) almost 16 mo. 16 lb 11 oz