New here and tons of questions...

[Guest guest]

My daughter has tentatively been diagnosed with RSS...we are

awaiting the bone scan...but she has many of the characteristics.

Born 4 lbs 12 oz., asymmetry, poor appetite, low tone, blue tint of

the whites of the eyes, low ears, but not so much the triangle

face...She is 7 months old and now 12 lbs and 24 in.

I have lots of questions - when do these kids crawl, walk

typically? Any suggestions on getting her to eat more? We are

finally up to around 20 oz a day, but it takes me almost all day to

get it in her...she takes baby food very sporadically and only a

little bit, which then makes her take less formula in the day.

She sleeps great at night, but naps are difficult...she struggles to

get to sleep (constant movement, head rolling, babbling) for 10 to

15 minutes and then once asleep it is only for 45 min. Niot sure if

this is related to RSS, or just her own routine.

Can you give me other things to look out for?

BTW, she's been in PT since 2 mos old, so we are getting help

there..she sits up, but supports herself...her right side is weaker

so prone is difficult for long periods...she actually rolls as soon

as I put her in tummy time.

I've got more questions, but I'll leave it for now...

thanks

[Guest guest]

Hi

I just thought I might try to answer some of your questions, but I

also would suggest that you go to www.magicfoundation.org and look at

their information on RSS. The Magic foundation is a wonderful

organization for families of children with all sorts of growth

issues. I don't know where we would be without it!

Now to some of your questions.

My son was 4lb. 5 oz at birth and lost down to under 4 before he

started really gaining any at all. He hardley ate anything for a long

time, and when he did he through up half of it. He did not sleep well

and still doesn't at age 8 years. He crawled at 12 months wieghing

around 12 pounds. He did not walk until 22 months of age. (after

having ear tubes placed) I think part of his late walking was due to

balance because he had so much fluid build up in his ears! He did

have PT and OT until age 3. He also had speech until age 3. (He still

has some PT and OT through the school) He suffers from severe reflux

even now and takes medication to control it! One of the biggest

worries with infants is silent hypoglycemia (low blood sugar) so even

if they sleep through the night it is good to wake them and feed them

so they don't go without nutrician for very long (especially

considering how little they eat in the first place.) My son eats

right before he goes to bed now at age 8, but when he was a baby he

woke up to eat. I did not have to wake him.

He was not diagnosed with RSS until 10 months of age with a

geneticist. We have since then been followed by a pediatric

endocrinologist, as well as a GI doctor (for the reflux).

I hope this information helps you.

Does your little one have the curved pinkies? My son loves that his

hands are made special! He also has just about every other thing on

the list, but not all of them! If you want to see pictures of RSS

kids, you can go to the photos section on the website for yahoo

groups and see pictures. My son is Storm.

Blessings to you and keep the question coming!

Carmen, Mom to Paisley Age 11 Non RSS, and Storm age 8y 10m, RSS, 51

pounds and 48 inches. (And four foster children)

[Guest guest]

Welcome!

My son was also born 4 lbs 12 oz, 15 " and he is now 5 months old. We

don't have a definate diagnosis yet either. We just had the Early

Intervention people do a developmental assesment yesterday and he is

1 month behind on everything but cognative (he is 2 months ahead

This is a wonderful resource..I am a fairly new member also but if

you search the archives there are some helpful hints!

Take Care,

Mimi (Mom to Isaac 5 mos, RSS?, hypothyroid)