Re: eating issues was: FTT dx

[Guest guest]

is just like Conner, a lot of times she just doesn't recognize hunger.

She can describe her stomach trying to eat itself and still not recognize

she is hungry and if she doesn't think she is hungry then she won't eat. Its

very frustrating but you can't force them to eat without ending up in major

food battles. Its very frustrating and is costing us a lot of money because

I can't get her to eat and gain weight so we can go back to SCIG and the

insurance here won't pay for formula because they consider her being just a

picky eater (She LOVES Chocolate Elecare). fwiw, does have sensory

issues and was in therapy as a baby they were so bad. I have asked the GI

for the stimulants over the years but he wont order them for her because " I "

am skinny and he thinks she's just taking after me genetically. Anyway I do

have a drink recipe that has I think it was 1600 calories in 16 oz if anyone

wants it. Its pretty good and makes good popsicles and its dairy free:)

Re: FTT dx

> Valarie,

> I'm sorry you're having to deal with this. We've gone through this off

> and on with Conner for years. In our case, I truly believe that he does

> not feel hunger. I can't remember a time that he has ever reported

> feeling hungry and he doesn't even think about eating unless food is

> offered (this is definitely not the case with our other kids!). I've

> wondered if it could be a sensory thing with him, or maybe even

> neurological. He still has a fairly limited diet and this became really

> difficult during transplant because chemo changes the way food tastes. We

> knew this would likely happened and warned him ahead of time, but he

> ultimately had to have an NG tube placed while he was in the hospital. He

> really hated this idea (most teens refuse the NG) and we gave him the

> opportunity to skip the tube if he could eat, but he couldn't even force

> himself and finally just allowed the NG. He ended up loving it so much

> that he didn't want it removed when we left the hospital, it made his li

> fe so much easier to not have to worry about eating. We still struggle to

> get him up to 1,000 calories per day, he really needs more to build his

> marrow, but the docs think he'll be OK. There are medications available

> to stimulate the appetite, but some have side effects. If you think

> appetite could be a problem, it might be worth having this discussion with

> your docs.

>

> I know how frustrating this can be, I've had so many other parents offer

> advice and that only makes me more frustrated. Some kids just don't eat!

>

> Hang in there!

>

> (NEMO carrier)

> Mom to Hayden (13-unknown PID), Evan (13-unknown PID), Conner (13-NEMO;

> transplanted 8/17/07) and Kelsey (12-unknown PID and NEMO carrier).

> Wife to (unknown PID).

> www.caringbridge.org/visit/smithkids

>

>

>