Re: Two RSS Kids

[Guest guest]

Hi Sue,

Welcome to the group! You'll find some of the best people on Earth here!

This site is loaded with tons of imformative, supportive, caring people!

My g-son, , is 100% g-tube fed, and has numerous feeding issues.

Mainly he doesn't take much, if anything, by mouth. We are currently working

with an OT, and we seem to be making some progress, but has done

well before, and then he backed off again. Feeding issues seem to be a

mainstay with RSS.

Sorry I can't be of more help, but know that you aren't alone out there!

Once again, welcome!

Pat (g-ma to , RSS, 25 months, 20# 5.6oz, 29.1 " , Prevacid, Singulair,

GT)

[Guest guest]

Sue - you sure hit the lottery -- 2 RSS kids. By now, I guess you

have learned that the odds of that happening are about the same as

winning the lottery -- OK, maybe better odds, but still 1 in 50,000

or so. WOW!

When your son began the Megace in August, did they tell you if it

had been FDA approved yet? I know that 3 years ago, our GI wanted

us to try it experimentally (there was one study of kids on it) but

Dr. Harbison and our pediatrician were flat against it -- what with

Periactin being there. But it sounds like your son had a better

response to Megace. What were the side effects, if you don't mind

my asking. I just remember the doctors' faces and they were

adamant -- something about, gosh, I wish I could recall -- fluid

buildup or something?

The appetite does eventually pickup but not for a long time..... I

think many parents are finally just saying what the Europeans have

been saying for a long time -- do everything we can to ensure that

they snack or are fed every 2-4 hours to prevent the slipping of

ketones/hypoglycemia (and for many kids this means a G-tube), but

after that, they most likely are going to still be skinny. And with

the increased risks for insulin resistance and subsequent health

complication risks as adults, maybe being too think is a good thing

(at least that is what I am beginning to think).

Do you have all the RSS literature from the MAGIC Foundation

(www.magicfoundation.org)? We have a handful of families out of

700+ that have 2 RSS kids. We can hook you up with them, or other

RSS families in your local geographic area.

Would you be able to come to Chicago this summer for the MAGIC

convention? Incredible experience -- last year 120 RSS/SGA families

and their children milling about; amazing medical presentations for

the parents, social stuff, networking, etc. Our first year changed

our lives, and now every year our daughter wants to go back and

see " her friends. "

Bye for now. Salem

> Hi there - I'm new to the support list. After going it on our own

> for so many years, I thought it would be nice to connect with

others

> dealing with similar challenges. I have two RSS kids -

(4.5

> yr) and Olivia (18 mos). Neither of them have ever been on the

growth

> charts, both have feeding tubes, and up until two weeks ago,

neither

> of them eat voluntarily.

>

> Olivia had a really bad stomach bug and when she got over it, she

> suddenly wanted to eat everything. Now she's having a tough time

> teething and I'm terrified she'll quit again.

>

> on the other hand, has been through a two month inpatient

> feeding program in 2001 and would accept being fed pureed foods.

> That's as far as he got until we put him on Megace in Aug. He ate

> any kind of food (and fed himself) like a champ, but had such

> horrible side effects that we had to take him off at Christmas.

So,

> now the hunger strike has resumed. He's on Periactin again, but

he

> didn't respond to it previously so I'm not optimistic. Pre-Megace

he

> got an overnight drip and we stopped it in Oct. He's down 4 lbs

so

> we'll probably need to start it again, but I want to give the

> Periactin a chance. He also takes growth hormone.

>

> They're two tiny kids that take a lot of work, but they're

awesome.

> I'm just so thankful that one of them is eating now.

>

> Have any of you had similar feeding issues? Is there a point when

the

> appetite picks up naturally? Any suggestions? I feel like we've

> tried everything.

>

> thx!

> Sue

[Guest guest]

Thanks for the warm welcome!

I guess we should be playing the lottery, because the odds really are

incredible. Our doctors were shocked when we had another slow-grower

during the first trimester. But the second one is easier. It took

us a long time to figure out what was going on with so we

were constantly waiting for some horrible disease diagnosis. Although

I look at all we've been through, and continue to go through with him

at 4 yrs, and I think how can we possibly do another 4 yrs of this

with Olivia.

The funny thing about Megace was back in March our endocrinologist

wanted to start it, but our GI didn't. Then in August our GI wanted

to try it, but our endocrinologist didn't. Both times the opposing

doctor cited side effects and both said they don't recommend it.

Both had used it with good results in the past, but it requires a lot

of coordination between the two doctors and these two didn't

cooperate with each other very well - different hospitals.

Anyway - Megace side effects - had them all. Adrenal

suppression - treated with steriods (which also had side effects),

bit-time irritability, moodiness, headaches, pimples, hair growth

(yes, my 4 yr old has a hairy back), but the irriability was really

what made us decide to take him off. It really had altered his

personality to where he was a different child. He wasn't happy

anymore, didn't have as much fun and was getting agressive. It just

didn't seem fair to him or anyone around him. I will say that Megace

works really well - there was NOTHING wouldn't eat. He

gained a ton of weight in a short period of time. But when you come

off, the eating stops. He gained 4 lbs on it in less than 4 mos and

has lost 4 lbs off of it in less than 2 mos.

was born 2 mos early and weighed 1 lb 11 oz at birth. Now at

4.5 yrs, he weighs about 23 lbs. I'm afraid I'll jinx myself by

writing it here, but after 3 days back on the Periactin, he started

eating again today. I never noticed a response to it when he took it

before, but he was been fed under a pretty rigorous behavior feeding

protocol. I'll just keep my fingers crossed.

Miss Olivia on the other hand, seems to have a milder case of RSS

than . She was term, but weighed only 2 lbs 6 oz. Her

physical RSS characteristics are fewer, but she is one tiny kid. At

18 mos she weighs 13lbs. She's gained an lost the same half a pound

since June. Her peak then was 13.5. She's had a tough time with ear

infections, plus she got pneumonia. She has also had two nasty

stomach bugs. I'm hoping that now that she's eating, she'll start

building up a better reserve coming out of the winter. Also keeping

my fingers crossed that the teething won't cause her to become

feeding averse again.

I've checked out the MAGIC website. It would be nice to chat with

other 2 RSS kid families or some folks in the DFW area. I doubt my

husband would be into it, but after dealing with it ourselves for so

long, it might be nice to chat with others. We're old hands at it

now so we could probably be a good resource for others too - kind of

like our 2nd stay at the NICU.

When is the convention?