Two RSS Kids

[Guest guest]

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