Re: Help A few ?'s about RSS

[Guest guest]

Hi Kathlene,

Welcome to our group. I hope we can answer your questions.

From your description, Calvin seems to have many of the RSS

characterisics. However, like you said, we are not doctors and cannot

not make a diagnosis. It would seem that RSS is a distinct

possibility. I think you are taking the right step in going to see a

pediactric endocrinologist. Be prepared, he/she may refer you to a

geneticist. After all RSS is a genetic disoder.

The ped. endo, can give you a better idea on when a feeding tube is

needed. Our ped. endo would not consider a feeding tube unless my son

was losing weight for a considerable period of time. If that is the

case for you, you may have some anguish to go through first.

If Calvin does need a feeding tube, you can still give him solid

foods orally. In fact, I suspect, that the doctors may insist on it

after a while. But this is just speculation until you can get to a

doctor and get some definite answers.

Please keep in mind that there is no test for RSS. This is a best

guess diagnosis. Like many of us, you may be left with a statement

like " Well, we think it is RSS but we can't be sure. Nothing else

seems to explain his slow growth and low appetite. " Regardless, the

treatment is still the same. Do the best you can with the foods he

likes or tolerates and get the most calories in him with least

possible quantity of food. Later, growth hormone maybe recommended.

Many here chose that route, but some do not. I'm afraid on that one

you must let your conscience be your guide. However, like with my son

it really wasn't an option. He chronological age was advancing far

more rapidly than his bone age and it was interferring with his

ability to learn in school.

Last, his small size is probably due to both his lack of appetite and

RSS (if that is what he has). If he is RSS, even if you could give

all the calories he needs, he would still probably be small. That is

the nature of RSS.

Hopefully, others will respond soon and answer some of things I

missed or as usual, didn't think of.

I hope this helps.

Ken M

>

> Hello

> I have been reading the passed few months of postins, hoping to

learn

> some information. Today I am finally positing.

>

> Here's my story. My son was born at 31 weeks at 1lb 12 0z. He was

> diagnosed as IUGR and SGA. We had to induce becasue the blood flow

> reverved in utero. Calvin was just a feeder grower in the NICU for

7

> weeks. He has always gained weight slowly and is very short and

thin

> for his age. He is now 2 1/2 and weighs 22.5 pounds and is 32.5

> inches tall. He has a triangler face with a broad forehead and had

a

> hypospadia. He looks proportaite but is small. I asked our ped.

> about growth hormone shots and he said yes and is sending us to a

> endro doc. in Feb. Every since he was born I though RSS sounded

> like Calvin. What do you guys think. I know we are not doctors

but

> we know our children. Calvin eats but he just does not eat alot at

a

> sitting. The big problem for Calin is that he vomitted for 8

months

> until we found out that he has severe allergies to eggs, milk,

wheat,

> soy, beef, chicken, peanut and the list goes on. So the foods he

can

> eat are very limited. He also sleep very poorly when he was little

> and finally started taking a 2 hour nap in the afternoon. He could

> wake up for a bottle in the middle of the night until he gave up

his

> bootle after he last pee pee surgery in November. We alway feed

him

> at night to give he the little extra food. I am not sure whether he

> is so small because of what he can eat, the allergies or some type

of

> dwarfism. What do you all think?? What were your stories? I am

not

> scared of RSS, I just want to help him. I am a little concerned

> about this G tube. Do you still eat real food with a G tube ? When

> do kids get G tubes and why? Please help me I have had all these

> question for 2 1/2 years and its killing me. I am extrememly lucky

> because Calvin is a happy child and smart.

>

> Thanks for listening

>

> Kathlene

> 3 1/2 (non- rss but was IUGR at birth)

> Calvin (?Rss 22.5 lbs and 32.5in)