Re: Two RSS Kids/Convention

[Guest guest]

- Your list of side effects of Megace somewhat jolted my

brain. Megace has been a remarkable drug for adults with AIDS and

some adults with breast cancer who have lost too much weight. But

all I remembered was that our local GI wanted on it, we said

we needed time to think and then when we saw DR. H, she was like NO

WAY.

Anyway!!!

To answer your question, the convention this summer is July 22-25th

and is at the Marriott O'Hare Hotel outside the airport in Chicago,

IL. It truly is amazing -- many of this listserve has been, and can

vouch for what you learn. No matter how old hand we are, each year

we keep learning more and more new things -- as suddenly in the last

2-3 years, EVERYONE wants to study RSS and SGA kids. The biggest

increase in studies has to do with the effects of GH on these kids

(a), and also the issue of insulin resistance and the possible

health risks that children born SGA can experience as adults.

I will repost an email giving the presentation outline again real

soon -- watch for it. Last year there were 120+ RSS/SGA families

that attend, with more than 450 people -- just from our division.

Plus another 500 or so from the other 11 MAGIC divisions.

Salem

> 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?