Re: tube feeding.

[Guest guest]

The decision of whether or not to tube feed is a complicated one. But

in my humble opinion, if your child is not eating for a day or so at a

time, or even for half a day and is symptomatic, then she has to be

fed one way or another.

When this happens, do you check for ketones? Do you check blood

sugar? Our kids do not have enough stores of glycogen, fat, sugars to

go for any length of time without food. If this is a pattern and it

goes on for 2(!!) weeks at a time, then you have to have some sort of

back-up plan to get food into her. I cannot stress this enough. That

brain will take whatever it can to get what it needs at the cost to

the rest of the body. A whole chemical reaction results and it can

get complicated, as has found out with Dasia - and

experienced with Ian.

Jodi Z

[Guest guest]

The decision of whether or not to tube feed is a complicated one. But

in my humble opinion, if your child is not eating for a day or so at a

time, or even for half a day and is symptomatic, then she has to be

fed one way or another.

When this happens, do you check for ketones? Do you check blood

sugar? Our kids do not have enough stores of glycogen, fat, sugars to

go for any length of time without food. If this is a pattern and it

goes on for 2(!!) weeks at a time, then you have to have some sort of

back-up plan to get food into her. I cannot stress this enough. That

brain will take whatever it can to get what it needs at the cost to

the rest of the body. A whole chemical reaction results and it can

get complicated, as has found out with Dasia - and

experienced with Ian.

Jodi Z

[Guest guest]

One more thing: if your child IS eating, but is not eating enough or

getting enough calories, that is another reason to consider tube

feeds. But other methods are usually tried first, including Periactin

to stimulate the appetite.

Jodi Z

[Guest guest]

I sent a " stronger opinion " privately - but, I wholeheartedly agree

with Jodi. Thank you for sharing your thoughts Jodi Z.

- H

>

> The decision of whether or not to tube feed is a complicated one.

But

> in my humble opinion, if your child is not eating for a day or so

at a

> time, or even for half a day and is symptomatic, then she has to

be

> fed one way or another.

>

> When this happens, do you check for ketones? Do you check blood

> sugar? Our kids do not have enough stores of glycogen, fat,

sugars to

> go for any length of time without food. If this is a pattern and

it

> goes on for 2(!!) weeks at a time, then you have to have some sort

of

> back-up plan to get food into her. I cannot stress this enough.

That

> brain will take whatever it can to get what it needs at the cost

to

> the rest of the body. A whole chemical reaction results and it

can

> get complicated, as has found out with Dasia - and

> experienced with Ian.

>

> Jodi Z

>

[Guest guest]

Hi Jayne,

First of all welcome! I haven't had the chance to be on much lately. I just

want to give my opinion of what happened with Dasia. For as long as I can

remember, we have had sporadic days where she will not eat. Or over a couple

weeks her appetite would be significantly decreased. Last winter she got sick a

lot, but nowhere near as sick for as long and steady as this year. I think all

the days or weeks, over time, when she wasn't getting everything her body needed

was a slow breakdown of her body, and now her immune system can't fight even a

cold. The same thing happened with another little girl Autumn. They stay so sick

so often that you'll do anything to make it stop. And you can get a child

perfect nutrition with a tube. I just think these kids have enough of an uphill

battle, and if we can provide perfect nutrition for them, I think they stand a

much better chance. And, I think the anxiety of wondering if the lack of

calories and nutrition is causing harm, is far worse than

the inconveniences of tube feeding. I can rest now, knowing I've done

everything I can to make sure she has the best chance. We understand that this

is not an easy thing though! From the time of knowing she may one day need a

tube was 4 months ago, and I had always been against it because those " good

days " gave me a false perception that she would make up for the bad days and be

fine. So it takes time to come to this decision.

You will have all the support in the world here to get you through whatever

you need!

Just hang in there and trust your instincts!

Mom to Dasia

23mo RSS

can anyone enlighten me? at what point does a child have to be tube

fed.? who would tell me? Lily hadnt ate for 2 weeks and is now eating

again. she does this.when she is eating we think she doesnt need it

and then when she doesnt eat we want her to have it. we dont know if

she is managed badly because we dont know what her management would be

if managed well, if you know what i mean.?

[Guest guest]

- you couldn't have said it any better. Same thing happened

with Ian. Thank you for this post - it was perfectly said.

- H

>

> Hi Jayne,

> First of all welcome! I haven't had the chance to be on much

lately. I just want to give my opinion of what happened with Dasia.

For as long as I can remember, we have had sporadic days where she

will not eat. Or over a couple weeks her appetite would be

significantly decreased. Last winter she got sick a lot, but nowhere

near as sick for as long and steady as this year. I think all the

days or weeks, over time, when she wasn't getting everything her

body needed was a slow breakdown of her body, and now her immune

system can't fight even a cold. The same thing happened with another

little girl Autumn. They stay so sick so often that you'll do

anything to make it stop. And you can get a child perfect nutrition

with a tube. I just think these kids have enough of an uphill

battle, and if we can provide perfect nutrition for them, I think

they stand a much better chance. And, I think the anxiety of

wondering if the lack of calories and nutrition is causing harm, is

far worse than

> the inconveniences of tube feeding. I can rest now, knowing I've

done everything I can to make sure she has the best chance. We

understand that this is not an easy thing though! From the time of

knowing she may one day need a tube was 4 months ago, and I had

always been against it because those " good days " gave me a false

perception that she would make up for the bad days and be fine. So

it takes time to come to this decision.

> You will have all the support in the world here to get you

through whatever you need!

> Just hang in there and trust your instincts!

>

> Mom to Dasia

> 23mo RSS

>

>

> can anyone enlighten me? at what point does a child have to be

tube

> fed.? who would tell me? Lily hadnt ate for 2 weeks and is now

eating

> again. she does this.when she is eating we think she doesnt need

it

> and then when she doesnt eat we want her to have it. we dont know

if

> she is managed badly because we dont know what her management

would be

> if managed well, if you know what i mean.?

>

>

>

>

>

>

>

[Guest guest]

I have to agree with 's post. My daughter Autumn (almost 2

yrs) got a g-tube nov 7 after a long battle and she just kept going

downhill. She was ALWAYS sick, miserable, in the hospital, not

eating, refusing to drink, had numerous iv's for fluids etc. We just

couldn't help her. At 1 yr she was 15.5 lbs and was doing well for

RSS and only 1 hospital stay with iv fluids for refusal to eat at 6

weeks when sick. The older she got the worse she got. When she was

sick I would even try syringe feeding/drinking and she would scream

and throw it up. Finally after almost a year on periactin and no

help wiht weight gain, she was 16 lbs at 22 mos and very skinny

because she had grown in lenght but not weight, and she was put in

the hospital for refusal to eat/drink ANYTHING with another cold (she

was hospitalized a couple of times in the previous months along with

and ER visit..also, just a simple cold would take her down). I

always seemed to wait just a little bit too long to take her in

convinced she would drink something in a little while and I was

convinced I just wasn't trying hard enough. Before her g-tube

surgery she got very sick and days and days went by with no food or

drink (she was on IV fluids in the hospital to help hydrate), so we

gave her a ng tube and she began to get her strength back. It was

amazing. 1.5 weeks later she got a g-tube and she is doing much

better now. She will be 2 next week and is 17 lbs 14.5 oz after a

full meal ( I like to weigh her after dinner, she is about 17 10 or

so in the morning). She has lost a couple oz in past 2 weeks, I

don't know why! but is still doing well. She is on her way up. I

have to say that the first real sickness she has had since g-tube

placement was last night when she got a fever (it's going around our

household). She has had a little stuffy nose or something but

nothing real until last night. Sure enough, she stopped eating and

drinking and screamed no when she saw anything I was offering, she

even screamed no to her tube feedings, but I of course did it anyways

and now a day later instead of her being lethargic and in the

hospital, she was up and playing some because I can keep her

nourished. Also, it helps her appetite come back much faster when

her nourishment is maintained at all times. Ironic, tube feedings

make her feel better so she will eat on her own. I went back and

forth with deciding to tube feed or not. On the days she would eat,

it would seem like the bad times were gone and maybe they won't

happen again. I also thought that if she was eating so well now,

then when she stopped eating it must be something I was doing wrong,

maybe not offering the right foods or something. Then the times when

she would be sick and not eating, I would just cry and nothing I did

would get her to eat, nothing, and most of the time she would reduce

or totally stop drinking. Then I was convinced she needed a tube.

Our family and friends would see her and jsut be so concerned because

she was looking so bad. Then again, over time seh got better and I

would think everything was fine becaseu again she was back to eating

well and she will be ok, she doesnt need a tube, it just never stayed

that way and overall, she got worse. It is a vicious cycle. By the

time she was scheduled for a g-tube it becamse obvious she really

needed one instead of choosing one and we couldn't wait that long so

the ng was temporary until the surgery.

I have to admit although the g-tube seems very strange at first it

becomes the norm pretty quickly! the only thing I regret about the g-

tube is not doing it earlier. I don't like medical intervention like

that and I try to go around it, but sometimes it is what is best, and

it was for Autumn. She only gets supplemental feedings when eating

well, that is to help her gain weight. When she is sick or not

eating, I do feeds to replace those lost calories to keep her

maintained.

Good luck.

mom to Autumn RSS, Summer SGA, Ocean, Skye

>

> Hi Jayne,

> First of all welcome! I haven't had the chance to be on much

lately. I just want to give my opinion of what happened with Dasia.

For as long as I can remember, we have had sporadic days where she

will not eat. Or over a couple weeks her appetite would be

significantly decreased. Last winter she got sick a lot, but nowhere

near as sick for as long and steady as this year. I think all the

days or weeks, over time, when she wasn't getting everything her body

needed was a slow breakdown of her body, and now her immune system

can't fight even a cold. The same thing happened with another little

girl Autumn. They stay so sick so often that you'll do anything to

make it stop. And you can get a child perfect nutrition with a tube.

I just think these kids have enough of an uphill battle, and if we

can provide perfect nutrition for them, I think they stand a much

better chance. And, I think the anxiety of wondering if the lack of

calories and nutrition is causing harm, is far worse than

> the inconveniences of tube feeding. I can rest now, knowing I've

done everything I can to make sure she has the best chance. We

understand that this is not an easy thing though! From the time of

knowing she may one day need a tube was 4 months ago, and I had

always been against it because those " good days " gave me a false

perception that she would make up for the bad days and be fine. So it

takes time to come to this decision.

> You will have all the support in the world here to get you

through whatever you need!

> Just hang in there and trust your instincts!

>

> Mom to Dasia

> 23mo RSS

>

>

> can anyone enlighten me? at what point does a child have to be

tube

> fed.? who would tell me? Lily hadnt ate for 2 weeks and is now

eating

> again. she does this.when she is eating we think she doesnt need it

> and then when she doesnt eat we want her to have it. we dont know

if

> she is managed badly because we dont know what her management would

be

> if managed well, if you know what i mean.?

>

>

>

>

>

>

>

[Guest guest]

I think that reading this and the other posts of people trying to

decide like H, help those that can't decide! I am not in that boat

yet and hopefully won't be as Noah does seem to be doing well with

the Periactin. If I see any sniffles or anything coming with any one

of my kids ... I act right away to keep Noah from getting too

sick ... well I've been trying to anyway ... it's funny how we live

and learn! I also think that it has helped me taking the Cold FX as

I am usually one to get lots of colds and such too. Hard time not

hugging and kissing my little ones when I'm sick ... lol.

... it was you who was in Florida with your Mom right?

How's she doing?

Dawna

Matt 13, 11, 8 and Noah 3 RSS

> >

> > Hi Jayne,

> > First of all welcome! I haven't had the chance to be on much

> lately. I just want to give my opinion of what happened with Dasia.

> For as long as I can remember, we have had sporadic days where she

> will not eat. Or over a couple weeks her appetite would be

> significantly decreased. Last winter she got sick a lot, but

nowhere

> near as sick for as long and steady as this year. I think all the

> days or weeks, over time, when she wasn't getting everything her

body

> needed was a slow breakdown of her body, and now her immune system

> can't fight even a cold. The same thing happened with another

little

> girl Autumn. They stay so sick so often that you'll do anything to

> make it stop. And you can get a child perfect nutrition with a

tube.

> I just think these kids have enough of an uphill battle, and if we

> can provide perfect nutrition for them, I think they stand a much

> better chance. And, I think the anxiety of wondering if the lack of

> calories and nutrition is causing harm, is far worse than

> > the inconveniences of tube feeding. I can rest now, knowing I've

> done everything I can to make sure she has the best chance. We

> understand that this is not an easy thing though! From the time of

> knowing she may one day need a tube was 4 months ago, and I had

> always been against it because those " good days " gave me a false

> perception that she would make up for the bad days and be fine. So

it

> takes time to come to this decision.

> > You will have all the support in the world here to get you

> through whatever you need!

> > Just hang in there and trust your instincts!

> >

> > Mom to Dasia

> > 23mo RSS

> >

> >

> > can anyone enlighten me? at what point does a child have to be

> tube

> > fed.? who would tell me? Lily hadnt ate for 2 weeks and is now

> eating

> > again. she does this.when she is eating we think she doesnt need

it

> > and then when she doesnt eat we want her to have it. we dont know

> if

> > she is managed badly because we dont know what her management

would

> be

> > if managed well, if you know what i mean.?

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

and - I'm right there with you - with very similar

circumstances with Ian - and I'm happier to know that things work

out better in the end with the G-tube. Thanks for your posts - they

were perfect.

- H

> >

> > Hi Jayne,

> > First of all welcome! I haven't had the chance to be on

much

> lately. I just want to give my opinion of what happened with

Dasia.

> For as long as I can remember, we have had sporadic days where she

> will not eat. Or over a couple weeks her appetite would be

> significantly decreased. Last winter she got sick a lot, but

nowhere

> near as sick for as long and steady as this year. I think all the

> days or weeks, over time, when she wasn't getting everything her

body

> needed was a slow breakdown of her body, and now her immune system

> can't fight even a cold. The same thing happened with another

little

> girl Autumn. They stay so sick so often that you'll do anything to

> make it stop. And you can get a child perfect nutrition with a

tube.

> I just think these kids have enough of an uphill battle, and if we

> can provide perfect nutrition for them, I think they stand a much

> better chance. And, I think the anxiety of wondering if the lack

of

> calories and nutrition is causing harm, is far worse than

> > the inconveniences of tube feeding. I can rest now, knowing

I've

> done everything I can to make sure she has the best chance. We

> understand that this is not an easy thing though! From the time of

> knowing she may one day need a tube was 4 months ago, and I had

> always been against it because those " good days " gave me a false

> perception that she would make up for the bad days and be fine. So

it

> takes time to come to this decision.

> > You will have all the support in the world here to get you

> through whatever you need!

> > Just hang in there and trust your instincts!

> >

> > Mom to Dasia

> > 23mo RSS

> >

> >

> > can anyone enlighten me? at what point does a child have to be

> tube

> > fed.? who would tell me? Lily hadnt ate for 2 weeks and is now

> eating

> > again. she does this.when she is eating we think she doesnt need

it

> > and then when she doesnt eat we want her to have it. we dont

know

> if

> > she is managed badly because we dont know what her management

would

> be

> > if managed well, if you know what i mean.?

> >

> >

> >

> >

> >

> >

> >