Please help us understand RSS

[Guest guest]

Hello,

My husband and I are going out of our minds with worry for our 4 and

1/2 month old- . The genetics Drs at s Hopkins in

Baltimore are telling us they are leaning towards a diagnosis of

RSS. was born on his due date (3/24/05) at 5lbs 9oz & 18

inches. He is now 10lbs 6oz and 24 1/2 inches long.

We have tried everything from formulas, nipples, bottles and feeding

techniques. He has been hospitalized for tests and a feeding tube

when he was 1 month old for failure to thrive. We thought this was

behind us when we found out he had reflux and the Zantac medicine

was helping until now.

is not thriving again and we are now on 26 cal formula with

Previcid once a day. Feeding times are so stressful. He just spits

out his formula. Today we are going on 13 hours since his last

decent feeding which was 3 oz.

If he does not " catch up " the drs are going to insert a feeding tube

surgically. is our first child and as you can imagine we are

worried sick. I can't sleep at night with all the talk about him

possibly having RSS. I have searched everywhere for information and

symptoms. I am beginning to think it is true because has one

leg a little longer than the other, the triangular face, large

forehead and curved pinky.

Can someone please help me to understand this syndrome? Will

live a " normal " live? Are there any similar syndromes that

it can be misdiagnosed with?

We love him unconditionally and we want to do everything possible to

give him the best life we can. People have already begun the " boy

he is small, he is a preemie " comments and of course I know is not a

preemie. Someone even had the nerve to say " Wow he has a BIG

head. " I was so upset I didn't know what to do.

When I discovered this forum I finally found a little peace after

seeing all the beautiful pictures of the children and I am hoping

that talking to parents with help too. The children look happy and

seem to be physically capable of most everything a child would

enjoy. The medical jargon doesn't always speak the

" truth " .

I am hoping to hear from someone soon. You see I am so sick with

fear and worry during this time we are also trying to cope with

watching my Mother battle the final stages of advanced breast cancer

and I already lost my father to cancer 12 years ago.

Thank you for reading this.