I am so STRESSED about what to do

October 22, 2005

Mellissa,

Don't get yourslef stressed thats what we are here for. I understand That

you feel maddison is too old to start this but Max Zwain Jodi Zwains son had his

tube removed and then when he was i think 14 i may be a year or so off they

had to put it back in. So never fear that.

I see what you mean about Maddison feeling better now but what happens if

she gets sick again? Overnight feeds sounds like a great idea for your daughter

and if her weight cathes up they can always stop tube feedings. The tube can

stay in but not be used. We haven't used Madison's g tube in about 3 months.

In answer to your question It's ur decision if she gets it however i'm

pretty sure Dr. H will say it's necessary.

Good luck and keep us posted

Chrissy

October 22, 2005

Ok I started sending posts week before last after Maddison was

getting over strep throat. Of course she has lost weight from being

sick she is 24lbs (4 yrs old). So then I made an appointment with

her gastro. to talk about a feeding tube because she is so thin and

seems tired all the time from school now and we can't get enough

food or peptamen jr. in her. A week or ago I was dead set on the

needed a feeding tube at night for extra calories. Now that she has

started eating closer to normal I am having mixed feelings again. I

know she doesn't have enough energy and is cranky because she is so

little but now it seems like I am feeling guilty because she isn't

sick and is eating a little better. I was told Dr. H wants their

weight to be 15% to height and someone here responded to me that

charting her she was well below the 3rd%. I just don't know who

should make the decision that it has come down to doing a feeding

tube this late at 4yrs. It seems like it would be easier on me if

they said yes she needs one no question about it. Our appointment

with gastro is this coming Thursday. I made an appointment with Dr

H. but it isn't until Feb and I don't know if we are even going to

be able to go because insurance isn't going to pay probably. But Dr

H is going to get all her records and look over them for us and tell

us what she thinks.(so says the lady that answers her phones and

makes the appointments). It is the not knowing that is driving me

crazy and then if they tell me it is up to us if we want to or not.

She doesn't have the blood sugar problems, and at school she has a

mid morning snack, lunch, and afternoon snack, that is assisted with

an aide and encouraged to eat it. So I am going crazy. What would

yall do? I have cried and cried myself with guilt about this and

what to do and most of all what to tell her if we do it. She is

4yrs, 24lbs, and 38 inches.

Tolbert

Maddison Tolbert, Georgia, RSS

October 22, 2005

Hi. I just needed to respond to this because this is exactly what I

am going through now, the only difference is Autumn is 21 mos. She

is scheduled to get a g-tube on november 7 and for the past few days

after a stomach virus she has been eating amazingly well ( for her)

and I am wondering if this is right? But then I switch back to why

we are doing it. She can eat very well then next morning, bam, she

is sick as anything, won't eat, barely drinks, pale as a ghost,

listless, and it lasts a while and then at those times I have no

doubt in my mind, then when she gets better and starts eating again I

think, hmm, maybe it will be fine and the bad times get blocked out.

Autumn has not gained weight in mos other than her yo-yo ing from

sick and lose a lot, gain some back, lose it, etc and she is uder 3rd

weight for height, not severely so but I don't think overall she is

too well. Her gi doc, ped, geneticist, endo along with all family

say she should have one but was our choice...eventually we decided

yes, but when she eats a lot of ice cream or cheese puffs then I

think, does she? She also gets tired very easily and doesn't seem to

be like she should. When she is sick she is listless and a cold can

knock her down for a long time, when she eats well she is more

energetic but it doesn't ever last long. Yesterday she ate really

well, today she barely eats becasue she is not feeling well adn is

very pale and crying a lot. Autumn has tried pericatin for almost a

year and has no effect on her. WE have tried nutritionists and the

problem is I can add as much butter as I want but it does no good

when she won't eat! They said the g-tube would be great to have adn

would help her a lot. They want supplimental calories at night and

more when sick. We want her to eat food as much as possible with the

tube on the side ensuring her weight gain and growth. We want access

to her because she is not dependable to keep herself healthy with

adequate calories and especially hydrated when sick...I know I have

rambled a lot here but I just wanted you to hear a similar story. I

also don't think 4 years old is too old at all...good luck.

mom to Autumn RSS, Summer, Ocean, Skye

>

> Ok I started sending posts week before last after Maddison was

> getting over strep throat. Of course she has lost weight from being

> sick she is 24lbs (4 yrs old). So then I made an appointment with

> her gastro. to talk about a feeding tube because she is so thin and

> seems tired all the time from school now and we can't get enough

> food or peptamen jr. in her. A week or ago I was dead set on the

> needed a feeding tube at night for extra calories. Now that she has

> started eating closer to normal I am having mixed feelings again. I

> know she doesn't have enough energy and is cranky because she is so

> little but now it seems like I am feeling guilty because she isn't

> sick and is eating a little better. I was told Dr. H wants their

> weight to be 15% to height and someone here responded to me that

> charting her she was well below the 3rd%. I just don't know who

> should make the decision that it has come down to doing a feeding

> tube this late at 4yrs. It seems like it would be easier on me if

> they said yes she needs one no question about it. Our appointment

> with gastro is this coming Thursday. I made an appointment with Dr

> H. but it isn't until Feb and I don't know if we are even going to

> be able to go because insurance isn't going to pay probably. But Dr

> H is going to get all her records and look over them for us and

tell

> us what she thinks.(so says the lady that answers her phones and

> makes the appointments). It is the not knowing that is driving me

> crazy and then if they tell me it is up to us if we want to or

not.

> She doesn't have the blood sugar problems, and at school she has a

> mid morning snack, lunch, and afternoon snack, that is assisted

with

> an aide and encouraged to eat it. So I am going crazy. What would

> yall do? I have cried and cried myself with guilt about this and

> what to do and most of all what to tell her if we do it. She is

> 4yrs, 24lbs, and 38 inches.

>

> Tolbert

> Maddison Tolbert, Georgia, RSS

>

October 22, 2005

,

Chrissy is correct: Max did have a feeding tube until he was 14 -

he needed it for nighttime feeds because of hypoglycemia and then

when that was under control, for when he was sick with stomach bugs

and in the hospital. It was the only way we would ever be able to

get him home after a week or two. Then the tube was pulled. He had

been doing well and not really needing it, so the GI docs agreed.

And he had terrible problems with granulation tissue.

The next spring Max got very sick with another stomach bug and wound

up in the hospital, as usual, but it was really bad. And stress

increased which made things worse. (Max tends to get stomach issues

when he is stressed from illness, then from stress and it's a

vicious cycle.) He had to have a picc line placed and be on TPN for

at least 6 weeks. We decided to schedule the triple procedure for

him that August and a new g-tube was placed. Apparently his old one

was too low anyway, as is the case with Chrissy's Madison. No one

told us that as they grew, the tube would need to be moved up! Max

was 15 then.

Last spring the tube was removed for good. We will NOT go back to

that unless it is really, really necessary. We would use a picc

line again before doing an invasive thing like the tube. He is 17

and just can't handle it psychologically.

Do I think we did the right thing to place the g-tube when he was

younger and not eating? You bet. He had severe hypoglycemia, did

not eat and we had no choice. It saved his life, his health, his

brain, his strength.

And that is where I think you need to focus. You are saying that

your Maddison sometimes barely has energy to make it through

school. That tells me right there that you are thinking in the

right way. If she is working so hard just to make it through the

day, then she needs supplemental nutrition to help her. She is

expending too much energy to just exist and that energy, instead of

being used for growing, is being used for survival.

I'm not a doctor. I'm only an experienced parent and I know I've

met you two and I can picture you as well. But I don't know all of

the circumstances. What I CAN assure you of is that insurance will

cover the surgery if it is determined that Maddison needs it. It IS

medically necessary if she needs it to grow and maintain her

health. And it will be such a relief for you once it is done and

over with. It's not easy. There are glitches along the way. But a

lot of us have been down that road and can help you. Overall, the

relief will be worth it.

Now try to relax and see what Dr. H. says - as well as your GI that

you are seeing soon. I know it's easy for me to say, but it will be

okay. And Maddison will be better off.

Jodi Z

October 25, 2005

kathrine,

If your child never gets sick, always has insane energy but just shows

very little interest in eating. Should I be looking into a g-tube?I would rather

do it earlier than later, but her endo hasn't brought anything like that up,but

he also hasn't said anything about this weight/height% and gh.What do you think?

She is 27.5 months old,17lbs and 29 inches tall.

Thanks,

Reah and Chloe:)

anderkat3 wrote: