G-Tubes_Older Children

[Guest guest]

Hi everyone,

Wow - After being on this listserve for 4 years now, I can hardly

believe that I'm starting to classify myself as having an (slightly)

older child! He's gone from this little, barely 2 year-old who

needed so much help to get healthy to a thriving 6 year-old who has

so much more energy and can do heaps more (of course, he still has a

few issues that other kids don't have to deal with, but not so many!).

If anyone can help, I'd be really grateful. Our doctors here really

don't give me any answers on this one, and I'm not going to be able

to see Dr. H until September or October.

Tyler's had a g-tube for just over 18 months, and it's been an

absolute life-saver! We love it. Dr. H saw him at the convention

last July and said he was still way too skinny (even though he's MUCH

better than he was before). He's been growing and putting on weight,

but his weight-to-height ratio has stayed about the same, so I'm sure

she would say he's still far too thin.

PROBLEM: What can we do at nighttime? He's been getting about 600 mls

overnight and about 400 mls in the daytime. He wakes every morning

between 5:00 - 6:00 am complaining that his diaper is wet - sometimes

it's completely soaked through his clothes and other times it's wet,

but not too bad. He's just getting to the age where he hates the

feeling of a wet diaper - at age 6, I don't blame him! BOTTOM LINE -

He's NOT getting enough sleep (terrible for anyone - I've been

reading the latest posts, and you all know what it's like to be sleep

deprived night after night). I'd love to stop the pump at night and

just give him extra food during the day, but I don't know if this is

the right thing to do. If we toilet-trained him at night, it seems

like it would be hard to ever go back to the pump. He doesn't have

any oral-sensory issues - his biggest problem is that he won't eat

enough calories to gain weight without the g-tube. Do you think we

could get 800-1000 calories into him through the g-tube just during

the day (plus have him eat dinner and a few snacks like he's doing

now)? Breakfast and lunch are tube feeds anyway ... Is it worth e-

mailing Dr. H about this, or should we just wait until September?

Thanks for any help. Now that we've got this g-tube, I can't find

any medical people who can help me answer questions about day-to-day

issues!

(Tyler - just turned 6; 110 cms; 15.4 kgs - around the 8th% on

the growth charts - started GH in Aug 2003 at way below the 1st%)