Re: new to group- Lori

[Guest guest]

Hi Lori

Welcome to the group, And well done with your daughters weight gain. When you

say 'you have created an appetite for her by being aggressive' what exactly do

you mean ( what feeding patterns etc. have you followed) My daughter Bobbi will

be 2yrs on Saturday and still doesn't drink anymore than 3.5oz at a time, she is

fed 6 times day (every 2.5 - 3hrs) current weight approx 19lb., so you have done

well for her to take 4-6oz at 9mths and 11lb! Just curious to know what feeding

pattern you have for her.

Feel free to e mail me privately on brigitte.foreman@...

Would be great to hear from you!

Take Care

Brigitte x

Re: new to group

Hi Kim,

My name is Lori and I am also new to this group. I give birth to twins in

June my daughter has RSS. They were 36 weeks earlier and she weighed 2 lb 10

oz. Now at 9 months she weights 11 lbs. She drinks 4-6 oz at a time now and

eats high calorie baby food. With her it was a lot a hour feedings with her

only drinking 1 oz. Now I believe I have created an appetite for her by being

aggresive. She has reflux now not bad at all. I think she has a mild form of

RSS. I know she is going to be very small but she has no other health problems.

She randomly sweats but only if she is bundled up with a hat or during feedings

sometimes. I know we are very lucky because she is very healthy just small.

We also have the problem of no doctors knowing what RSS is we've been to a

geneticist and he just confirmed the RSS. It was not a helpful dr appointment.

We are now going to an encronologist. But with her eating well and slowing

gaining it seems like there isn't much the drs will do.

Best of luck with your son. Sounds like he is really gaining great. I would

just say keep doing what your doing because its working.

Lori (Twins- Cole 19 lbs non RSS Chloe 11lbs RSS 9 months)

rddeppy wrote:

Hi my name is Kim I have three sons the youngest is he is

12 weeks and is being followed for suspected RSS. He was born 12/9/05

at 36 weeks weighing 3#12oz and 16.5 inches long. He has curved pinky

fingers which is one of the main reasons they began to suspect it.

We've been denying that this is the case. Today we went back to our

geneticist who still says this is RSS. He weighs 7#2oz and is 20.5

inches long. That seems like a great weight gain and growth to us! I

guess I'm wondering if there are varying degrees of RSS? He is

breastfed but we also give bottles of expressed milk with 22 calorie

formula mixed in. He doesnt have a huge appetite but today because we

were away from home he has had 4 bottles of 3oz each which is alot for

him. The geneticist said there is no test to give him that we'll just

have to watch and see. She's doing a followup u/s on his abdomen and

kidneys (his first was fine) but she wants to follow him for something

to do with his kidneys (tumors?). We see her again at a year. I am

looking forward to getting to know more about RSS and getting to know

more parents dealing with this. Thanks for any BTDT advice or stories

you'd be willing to share.