What weight were your kids when GH was started?

February 7, 2004

Hi,

I was wondering if n is still too skinny to start Gh. He's 3

1/2, 20.6 pounds and 84 cm.

He's totally g-tube fed. He's just had a growth spurt because I've

changed his feeding pattern to every 1/2 hour, then every hour,

alternating, and it's driving me insane living by the clock!

His endo says the GH will improve his appetite. I'm worried that

he'll grow taller, and get even skinnier, and I'll have to feed him

just as often or more to keep the calories up. I know a lot of kids

just get a g-tube at the time they start GH. I was hoping to do the

opposite and start GH, start periactin, and wean off the g-tube a

little.

Any thoughts?

Cindy

February 7, 2004

Hey Cindy,

I don't know if you remember me, but my name is Pat and I am G-ma to

. We talked down by the pool at the convention.

I was wondering if there's a reason that you don't have n on continual

feeds? Since the convention, has gotten bigger, and stronger, and is

now able to carry his pump around by himself in his backpack. I can't tell

you how much easier this makes everything! We put 200cc of formula in the

bag, start him up, and he can run around for about 6 hours. No more living

by the clock, at least not for feeding. LOL

I would worry about starting GH at this time. Do you think that n will

be able to gain weight 1.5-2 times faster than he does now? Even with a

slightly improved appetite? If he is totally g-tube fed, then those extra

calories will have to come via formula, and the amount of time you spend

bolusing will only increase. (That's why I would suggest looking into a

Zevex pump, and continual feeds) If you look at the stats with my signature,

is about more than a year younger, about 10cc shorter, but weights

about the same as n.

We are suppose to start on GHT this month. Dr H feels that he has

attained his caloric catch-up. One thing she said indicated that to her was

the fact that was having no problem gaining weight, but the large

weight gains were no longer followed by large growth spurts. He just kept

gaining, and stopped growing. Is this the case with n?

If you'd like to chat more, feel free to email me at pcpets @adelphia.net

Pat (g-ma to , RSS, 25 months, 20# 5.6oz, 29.1 " , Prevacid, Singulair,

GT)

February 7, 2004

He's still pretty skinny. That being said, the European folks don't

even deal with weight with our kids, think we Americans obsess to

much. The GH will require your son to almost double his weight

gain, but it also increases his appetite. If he is already tube

fed, I don't know -- it seems like it can't hurt in that you could

always fall back on increasing feeds if worse came to worse. When

you start to wean him, definitely do it with the Periactin as it

takes some time for that appetite to rejumpstart.

Jenn

> Hi,

>

> I was wondering if n is still too skinny to start Gh. He's 3

> 1/2, 20.6 pounds and 84 cm.

> He's totally g-tube fed. He's just had a growth spurt because I've

> changed his feeding pattern to every 1/2 hour, then every hour,

> alternating, and it's driving me insane living by the clock!

>

> His endo says the GH will improve his appetite. I'm worried that

> he'll grow taller, and get even skinnier, and I'll have to feed

him

> just as often or more to keep the calories up. I know a lot of

kids

> just get a g-tube at the time they start GH. I was hoping to do

the

> opposite and start GH, start periactin, and wean off the g-tube a

> little.

>

> Any thoughts?

>

> Cindy

February 7, 2004

Hi Pat,

Of course I remember you.

I knew someone would mention the continuous feeds. Our Gi doc brings

it up every time we see her.

Actually, one of the reasons why I don't want him on it is because

of something you told me, that it made 's hypoglycemia worse.

Our doc said that wouldn't happen, but I trust parents experiences

more than docs.

The other reasons me and my husband don't want him on it is because

he's so active, he has an older brother that he follows around,

wrestles, climbs around in the backyard with. It's hard enough for

him to keep up, much less having to carry around a pack. I think it

would be too heavy to put on his back now. I could just picture our

golden retriever seeing the bag, " Oh, how interesting " and taking

off with it, dragging n along with him across the yard!

I think what I want is an answer and a quick fix because I'm just

tired of it all.

I just always keep in mind that it's only temporary, but I want this

temporary-ness to be over already!

Cindy

February 7, 2004

Cindy,

Just an idea if you do continue feeding. We use a child's back pack with the

wheels on the bottom and the pull handle. It works great it, and you don't have

to worry about how heavy it is. They adpt well. Just put the portiable pump in

the back pack and let it go. I use it on my feeding (x3)during the day and if