Re: can anyone help?-LONG reply

[Guest guest]

Hi , welcome. My name is and my RSS daughter Autumn

just turned 20 mos today. Her gi and other doctors have decided they

definitley want to do a feeding tube and told me about it on

Wednesday at her gi appt. She weighed 16 lbs 14 oz and was 29.25

inches.(today after a bottle was 17 3 and 29.5 inches at another doc,

who knows but either way weight for length is under 3rd which is not

good) They are not happy with that at all and she has struggled to

gain weight for a while. She eats food although I can not give you

much of what she ate...today a 3.5 oz peptamin jr, a few cheerios,

2/3 cup yogurt, then a few tiny bites of pizza, a few cheese puffs

and a little apple juice, oh yeah, and part of a cracker..there is no

way this girl is getting enough. She has been in the hospital 3

times, 2 times requiring iv fluids and one er for fluids. She loses

weight easily and has trouble gaining it back and has no reserves.

my doctors said they want the g-tube for access. They want to give

her some extra calories at night, not too much though because she is

tiny, and she does eat some and they don't want to mess that up.

They also want to have access for times when she is sick so she can

maintain and not lose and remain well calorie wise and fluid wise.

They contacted me again today and told me they have discussed it with

her geneticist and it is unanimous and they really feel like it needs

to be done. Her ped thinks it is necessary as do every family member

and friend we have, yet my husband and I havn't quite given the go

ahead yet because I have seen worse without tubes and are scared of

the prospect especially because she does eat some and is not hospital

stay malnourished and we are just plain scared and is it really

necessary? Anyways, your post really hit home. WE have seen

nutritionists and tracked calories so many times I can't remember.

Autumn never took in what they calculated no matter what tricks they

gave us (the exact same tricks you are mentioning) it didn't work..

Her docs eventually determined that she has a low setpoint and it

couldn't be messed with (it was about time to realize the obvious.

Higher fat and calories then the less she would take and it would

even out. They tried an appetite stimulant and it didn't work. We

gave it 9 mos with no luck. Like mentioned earlier, brain growth is

so important now and I am scared to mess it up, but like I said, we

havn't given the go ahead yet...if only we could foresee the future.

I do have to tell you that the nutritionists we saw were very much

like what you mentioned. They really thought their ideas and tricks

would work magic, but they obviously have never dealt with a child

who just wouldn't eat enough no matter what is offered. Does she see

a gi doctor? Autumns docs have been tracking her for a while and

after over a year of it they want the tube. She occationally would

go through times where she looked 'full' and 'healthy' but it would

be short lived, she would gain some then grow some and go back to

herself getting sick, not eating, looking not great, hospital,

etc.... right now she is not looking too good. Thin and just not

right looking and she just keeps looking really pale. She was in teh

hospital for a bad athsma attack 3 weeks ago and no matter how much I

take her outside, her face remains pale. Anyways, this is late night

rambling for me, I am very tired so I hope some of this makes sense.

Feel free to e-mail me privately at anderkat3@.... I would

definitly suggest periactin for appetite stimulant and give it a try,

then maybe those high fat tricks will work because she will eat!

Again, Autumn's docs are stressing the importance of brain growth for

her. I am scared also because my oldest son (born average size, now

not on charts) was underweight beginning at 1 yr up and doctors and

nutritionist were always on my case but my family just dismissed it

so I figured hey, no problem (first baby,I trusted those been there

done that)even though he barely at and threw up a lot of what he

did. He was very bad weight for height for a while, anyways, now he

is on appetite stimulant and it is working wonders at 7 yrs old. He

started to say byby, dada, mama by 1 yr of age and seemed to progress

so well, then at the same time weight/height got bad, it stopped

progressing. Didn't get much more out of him until past 3 yrs and

now has behavioral problems, speech problems..etc and I wonder if

this is just chance or because I didn't listen to the doctors and

nutritionists, I felt he was fine. I will never know, could just

have been chance. (this all came to head a couple of days ago.

HIndsight is very clear) Anyays, realizing this makes me really

think the g-tube will be best for Autumn. Again, sorry this is so

long, I wanted to give you another perspective and doctors views of a

little girl about the same age and size as your little Dasia. Good

luck to you and Dasia!

mom to Autumn 20 mos RSS, athsma, Summer 2.5 mos, Ocean 3

yrs, Skye 7 yrs

>

>

> Hello,

> My name is , I learned of my daughters diagnosis last

> month, and a few days ago found this site, and thought I'd join the

> chats! Her name is Dasia, 19 months, 16lbs, 29in. My greatest

> concern is, I've heard so much about the feeding tubes, and her

> devel. ped. didn't mention it, I learned how common it is on-line

> after I got the diagnosis, and the nutritionist I've been working

> with wasn't thrilled about the idea when I brought it up to her

> recently. Yet I know Dasia definitely has plenty of bad days, and

> inside I'm terribly afraid of compromising her final height, or her

> brain development! The nutr. says she should be getting 850

> calories, and I'm quite sure that rarely happens, if ever. Is there

> anyone with the same aged child who could say how much their child

> is getting? Or someone who remembers this age? I have to blend her

> food, all high calorie, high fat foods, and on a good day she'll

> finish two 4oz containers, one usually at lunch and the other at

> dinner. I add heavy whipping cream to her milk which has carn.

> instant breakfast, and on a good day will finish an 8oz cup. She'll

> have a little bit of food for breakfast, and a couple bites of

> different things I try to offer her during the day, and that's

> pretty much it! The only thing that has kept me from getting overly

> worked up about it all, is the fact that she doesn't look really

> skinny, she has a little double chin, and looks pretty healthy to

> me, with what looks like a healthy amount of baby fat, certainly

not

> as chunky as I would want, like my other 2 were! She just looks

like

> a much younger baby, and has a very small frame. The logical side

of

> me thinks her body wouldn't be storing any body fat, if the energy

> was intended for growth or brain devel., or maybe I'm just in

> denial! Anyone?

[Guest guest]

Hi !

Wow, your email was very enlightening. Please, never feel you're writing

too much! I sort of felt the same way about mine being too long. I appreciate

all the feedback so much. Your's is the last of the 4 responses I got, and the

more I've read, the more I've come to terms with the idea of the feeding tube. I

just can't have the anxiety of possibly being responsible, if it turns out she

has any learning disabilities. Autumn seems so similar by age weight and height,

yet Dasia has never needed an IV, or has ever lost weight, or looked skinny. She

does look a little pale sometimes, causing under her eyes to look a little

purple. To me she just looks like a pretty healthy 8 month old baby! Does Autumn

not have body fat you can see and grab? This is what is so confusing to me, on

Dasia you can see creases in her thighs from the fat, and I'd say pinch 1 1/2

inches of fat, and about an inch on her arms, and even on her chest, when her

posture isn't good, she has belly rolls. I just

would have thought that alone would say she wouldn't need a tube, but that's

why it's so great to have all of you!! I guess this is just my way of still

talking myself out of getting one. Yet when it comes down to it, I'll most

likely be getting one. I'm going to first try the periactin, and if that doesn't

work, I'll ask for the tube. Your note made a lot of difference for me, thank

you so much, I hope to keep in touch! cjajdmalcolm@...

nderkat3 wrote:

Hi , welcome. My name is and my RSS daughter Autumn

just turned 20 mos today. Her gi and other doctors have decided they

definitley want to do a feeding tube and told me about it on

Wednesday at her gi appt. She weighed 16 lbs 14 oz and was 29.25

inches.(today after a bottle was 17 3 and 29.5 inches at another doc,

who knows but either way weight for length is under 3rd which is not

good) They are not happy with that at all and she has struggled to

gain weight for a while. She eats food although I can not give you

much of what she ate...today a 3.5 oz peptamin jr, a few cheerios,

2/3 cup yogurt, then a few tiny bites of pizza, a few cheese puffs

and a little apple juice, oh yeah, and part of a cracker..there is no

way this girl is getting enough. She has been in the hospital 3

times, 2 times requiring iv fluids and one er for fluids. She loses

weight easily and has trouble gaining it back and has no reserves.

my doctors said they want the g-tube for access. They want to give

her some extra calories at night, not too much though because she is

tiny, and she does eat some and they don't want to mess that up.

They also want to have access for times when she is sick so she can

maintain and not lose and remain well calorie wise and fluid wise.

They contacted me again today and told me they have discussed it with

her geneticist and it is unanimous and they really feel like it needs

to be done. Her ped thinks it is necessary as do every family member

and friend we have, yet my husband and I havn't quite given the go

ahead yet because I have seen worse without tubes and are scared of

the prospect especially because she does eat some and is not hospital

stay malnourished and we are just plain scared and is it really

necessary? Anyways, your post really hit home. WE have seen

nutritionists and tracked calories so many times I can't remember.

Autumn never took in what they calculated no matter what tricks they

gave us (the exact same tricks you are mentioning) it didn't work..

Her docs eventually determined that she has a low setpoint and it

couldn't be messed with (it was about time to realize the obvious.

Higher fat and calories then the less she would take and it would

even out. They tried an appetite stimulant and it didn't work. We

gave it 9 mos with no luck. Like mentioned earlier, brain growth is

so important now and I am scared to mess it up, but like I said, we

havn't given the go ahead yet...if only we could foresee the future.

I do have to tell you that the nutritionists we saw were very much

like what you mentioned. They really thought their ideas and tricks

would work magic, but they obviously have never dealt with a child

who just wouldn't eat enough no matter what is offered. Does she see

a gi doctor? Autumns docs have been tracking her for a while and

after over a year of it they want the tube. She occationally would

go through times where she looked 'full' and 'healthy' but it would

be short lived, she would gain some then grow some and go back to

herself getting sick, not eating, looking not great, hospital,

etc.... right now she is not looking too good. Thin and just not

right looking and she just keeps looking really pale. She was in teh

hospital for a bad athsma attack 3 weeks ago and no matter how much I

take her outside, her face remains pale. Anyways, this is late night

rambling for me, I am very tired so I hope some of this makes sense.

Feel free to e-mail me privately at anderkat3@.... I would

definitly suggest periactin for appetite stimulant and give it a try,

then maybe those high fat tricks will work because she will eat!

Again, Autumn's docs are stressing the importance of brain growth for

her. I am scared also because my oldest son (born average size, now

not on charts) was underweight beginning at 1 yr up and doctors and

nutritionist were always on my case but my family just dismissed it

so I figured hey, no problem (first baby,I trusted those been there

done that)even though he barely at and threw up a lot of what he

did. He was very bad weight for height for a while, anyways, now he

is on appetite stimulant and it is working wonders at 7 yrs old. He

started to say byby, dada, mama by 1 yr of age and seemed to progress

so well, then at the same time weight/height got bad, it stopped

progressing. Didn't get much more out of him until past 3 yrs and

now has behavioral problems, speech problems..etc and I wonder if

this is just chance or because I didn't listen to the doctors and

nutritionists, I felt he was fine. I will never know, could just

have been chance. (this all came to head a couple of days ago.

HIndsight is very clear) Anyays, realizing this makes me really

think the g-tube will be best for Autumn. Again, sorry this is so

long, I wanted to give you another perspective and doctors views of a

little girl about the same age and size as your little Dasia. Good

luck to you and Dasia!

mom to Autumn 20 mos RSS, athsma, Summer 2.5 mos, Ocean 3

yrs, Skye 7 yrs

>

>

> Hello,

> My name is , I learned of my daughters diagnosis last

> month, and a few days ago found this site, and thought I'd join the

> chats! Her name is Dasia, 19 months, 16lbs, 29in. My greatest

> concern is, I've heard so much about the feeding tubes, and her

> devel. ped. didn't mention it, I learned how common it is on-line

> after I got the diagnosis, and the nutritionist I've been working

> with wasn't thrilled about the idea when I brought it up to her

> recently. Yet I know Dasia definitely has plenty of bad days, and

> inside I'm terribly afraid of compromising her final height, or her

> brain development! The nutr. says she should be getting 850

> calories, and I'm quite sure that rarely happens, if ever. Is there

> anyone with the same aged child who could say how much their child

> is getting? Or someone who remembers this age? I have to blend her

> food, all high calorie, high fat foods, and on a good day she'll

> finish two 4oz containers, one usually at lunch and the other at

> dinner. I add heavy whipping cream to her milk which has carn.

> instant breakfast, and on a good day will finish an 8oz cup. She'll

> have a little bit of food for breakfast, and a couple bites of

> different things I try to offer her during the day, and that's

> pretty much it! The only thing that has kept me from getting overly

> worked up about it all, is the fact that she doesn't look really

> skinny, she has a little double chin, and looks pretty healthy to

> me, with what looks like a healthy amount of baby fat, certainly

not

> as chunky as I would want, like my other 2 were! She just looks

like

> a much younger baby, and has a very small frame. The logical side

of

> me thinks her body wouldn't be storing any body fat, if the energy

> was intended for growth or brain devel., or maybe I'm just in

> denial! Anyone?

[Guest guest]

Hi . I read in another e-mail that you are from Indiana, is

that right? We are located in Cincinnati Ohio which isn't too far.

she sees all her doctors at Cincinnati childrens hospital. Autumn

doesn't really have any real fat on her. She has a little something

on her thighs but nothing amounting to rolls, its just a little

thicker than her calves but not what I would call bony. Autumn does

have a belly sometimes but it is from her always being constipated.

She is on a laxative and still has trouble going. when its been a

few days it sticks out then after it goes back in! Other wise she

doesn't have much if any fat but she doesn't look starved. Keep in

touch!

mom to Autumn RSS, Summer, Ocean , Skye

> >

> >

> > Hello,

> > My name is , I learned of my daughters diagnosis

last

> > month, and a few days ago found this site, and thought I'd join

the

> > chats! Her name is Dasia, 19 months, 16lbs, 29in. My greatest

> > concern is, I've heard so much about the feeding tubes, and her

> > devel. ped. didn't mention it, I learned how common it is on-line

> > after I got the diagnosis, and the nutritionist I've been working

> > with wasn't thrilled about the idea when I brought it up to her

> > recently. Yet I know Dasia definitely has plenty of bad days, and

> > inside I'm terribly afraid of compromising her final height, or

her

> > brain development! The nutr. says she should be getting 850

> > calories, and I'm quite sure that rarely happens, if ever. Is

there

> > anyone with the same aged child who could say how much their

child

> > is getting? Or someone who remembers this age? I have to blend

her

> > food, all high calorie, high fat foods, and on a good day she'll

> > finish two 4oz containers, one usually at lunch and the other at

> > dinner. I add heavy whipping cream to her milk which has carn.

> > instant breakfast, and on a good day will finish an 8oz cup.

She'll

> > have a little bit of food for breakfast, and a couple bites of

> > different things I try to offer her during the day, and that's

> > pretty much it! The only thing that has kept me from getting

overly

> > worked up about it all, is the fact that she doesn't look really

> > skinny, she has a little double chin, and looks pretty healthy to

> > me, with what looks like a healthy amount of baby fat, certainly

> not

> > as chunky as I would want, like my other 2 were! She just looks

> like

> > a much younger baby, and has a very small frame. The logical side

> of

> > me thinks her body wouldn't be storing any body fat, if the

energy

> > was intended for growth or brain devel., or maybe I'm just in

> > denial! Anyone?

>

>

>

>

>