Re: Re: Questions regarding tubes

[Guest guest]

Hey Everyone!

I had a question about the different chromosome abnormalities, that could

be mistaken for RSS. Does anything change course if it turns out that there is

an exact link to what caused these traits? Does everyone do the tests, should I?

My other question was about the digestive disorders, does this begin at birth,

or can this still occur later? Thinking of my Dasia, 20mo. Thanks everyone!!

Jodi Zwain wrote:

Dawna,

The decision to get a g-tube is based on several factors. One is

Noah's weight. Is he gaining weight? Is his weight for height

proportion in the " normal " range? Does he have hypoglycemia? Do

you struggle to get every single calorie into him? These are just a

few things to consider.

Most of us who have gone the g-tube route have fought it and denied

the need and just not wanted anything to do with it. But once it

was placed, every single one of us has been so very thankful. It's

not hard to deal with, although a bit daunting at first, and it

takes so much stress off of us! No more need to fight to get those

calories in!

Yes, kids with tubes DO eat. Most of them, anyway. Max was on 24

hour feedings for a few years, then we were able to switch to just

nighttime feeds. He was never able to tolerate bolus feeds, which

means that you put the formula into a large syringe and push it into

the tube, several ounces at a time. He ate fairly well during the

day, but if he had a bad one, we just had to add the extra calories

into his pump feedings at night. Unfortunately, he had nighttime

hypogylcemia, so we had to continue the feeds for longer than

planned. He just could not go all night without food.

As for the hypoglycemia part, you can ask your doctor to check

Noah's blood sugar levels, but you might not catch a drop in them at

that particular point in time. You really need to have a glucose

monitor and test his sugars at various times during the day over a

certain period of time - and whenever you think he is just not

acting right. For example, Jodie Cals emailed me on Saturday that

's behavior was off and his blood sugar level was 80.

(According to Dr. H., that is on the low end of " normal " for our

kids.) Sure enough, he started to run a fever a little later on.

You also should check for ketones. You would buy a bottle of

ketosticks at the pharmacy where the diabetic supplies are. Then

you collect just a few drops of urine and place them on the strip.

Compare the color of the strip, after a few seconds, to the color on

the bottle. If there are more than a trace, or even if there are a

trace, make him eat and/or drink. Drinking is especially important.

There is a whole protocol to follow if the ketones are moderate to

large, so let me know if you want me to go into this. I've made

this message long enough.

Jodi Z

> Hi all,

> I have a few questions about feeding tubes. It seems that most of

> the kids have them. Can you tell me at what point they seem to

need

> them? Our Ped wasn't following Noah that closely (will be now and

> I'm considering changing ... took me 3 mos to get the chomosome 7

> results that I'm sure were sitting there that long).

>

> Noah has never been sick and in hospital, he seems to eat but it's

> not much at a time, I'm getting really worried that we aren't

doing

> enough except at the same time I'm worried that he will need a

tube.

> Do you know what I mean? We were worried lately about

hypoglycemia

> he's always been a sweaty little guy (but then my others are too)

and

> lately he started waking in the night ... we've been giving him

milk

> not knowing if it was his sugars or if it was just behavoural.

Also

> since finding more info about RSS from here and Magic, I started

> putting a little corn starch in his milk before bed.

>

> I'm hoping the endocrinologist will shed some light next week when

we

> go cause we don't see the ped until november. I'm also going to

ask

> about that drug that starts with P for appetite. Sorry not up on

all

> the names yet. I'm going to see if he'll check Noah's sugar when

he

> does the other testing. We haven't been to the ped since the

spring

> so I don't even know if NOah has gained weight or not.

>

> Do the kids eat too when they have tubes?

>

> Dawna