Re: G-Tubes_Older Children

March 11, 2005

Hi

Its great to hear Tyler is doing so well. How is he going at school,

has he settled in??

Just a few things, you may already have tried with Tyler, but, could

you just reduce the night time feed by 100mls and pick that up

during the day, to at least reduce some of the fluid going in

overnight. Or could you increase the calories in the night time

feed, so he is getting more cal/ml and less fluid. Last Idea, Ive

noticed Liam (who is finally toilet trained during the day) usually

has a dry nappy still at 10ish when we go to bed, probably because

somewhere in his head he is holding on. Could you unplug Tyler and

take him to the toilet, just before you go to bed. I know we use to

do that with Cameron when he was toilet training overnight, he was

never really awake, but usually managed to go.

Hope you get this sorted, let us know what you do, Im sure we will

be facing this problem in a couple of years.

One more thing, are you on any gtube sites, they may have some ideas

for you.

Jody(mum to Liam 86cm, 11.5kg ght, zoton, gtube, and cameron )

>

> 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%)

March 14, 2005

Have you tried putting him to bed without a diaper? We were so

nervous when Colin wanted to stop wearing pull ups that he would

have accidents, but amazingly he can hold it all night. He goes pee

at 8pm right before bed and doesn't wake up until 7am usually. He

gets 590ml per night. He occasionally will call us in the middle of

the night if he has to go, but rarely has an accident. Maybe give it

a try? I do have double sheets on the bed so if there is an accident

we can whip them off fairly quickly and not have to remake the bed.

Colin (RSS, gtube) and Hayden - 4 year 3 mo. twins

>