Latest Update on Dalia-eating question

[Guest guest]

Hi everyone,

Just thought I'd do my monthly post..and read what's going on with

everyone.

Dalia just turned 1 a couple of weeks ago. She was 15lbs 3oz and

27in at her 1 year checkup (the GI doctor scale weighs a lot heavier

and she was 15lb 11oz a few weeks before that)...her weight gain

slowed down a lot since the 9 month visit, but she has been crawling

a lot. Also, she started to pull up to standing a couple of weeks

ago and now pulls up constantly and even cruises a bit.

Her doctors (pediatrician and GI) do not seem worried at all, but I

worry sometimes. She barely eats, but seems so happy and doesn't

look skinny. She is the one that Dr. H called chubby in Chicago and

said she was overfed at the time. Well now, she is around 25%

weight for height (I think), so I guess that is good. We are

dealing with a nutritionist and a ST for feeding. I thought we were

making progress with the baby food, but she sort of regressed a

little and only eats a few spoonfuls reluctantly at a time. She

only likes her bottle. She lives mainly on Pediasure and only

drinks around 16-18oz a day of that.

Anyway, I wonder if it is time for Periactin or something else...I

am torn because she seems to be ok weight for height, but I can't

believe she can survive on the little bit she eats and also the

solid foods are pretty much non-existent.

I'm sorry for rambling, but every so often I just wonder if I'm

doing everything I can. Half the time I want to hold back the

bottle to see if she'll cave in and eat more food, but I'm afraid to

starve her of the Pediasure.

One more thing...we saw a neurologist and a new endocrinologist

recently. The neurologist gave her a clean bill of health and the

endo said she looks fine and come back in a year to talk GH)

Sheryl (mom to Dalia, 1 year, 15lbs 3oz, 27in, SGA, mild asymmetry)

[Guest guest]

> Half the time I want to hold back the bottle to see if she'll

> cave in and eat more food,

Hi Sheryl-

Please don't do that. I ate SO little when I was growing up that my mother also

wondered

how I stayed alive. Not knowing what to do (or even why I was the way I was...I

wasn't

diagnosed until I was 15), and with a pedatrician who said, " she'll eat when she

gets

hungry, " she DID try withholding food once or twice, to see if I would

eventually get

hungry. I didn't. It just doesn't happen, Sheryl.

In my entire childhood, I remember feeling hungry ONE time and that was when I

was 7

years old. Didn't feel it again until I was in my teens and began to have a more

normalize

appetite (of course now, 3 months away from 39 years old, I am more than making

up for

it <wink>).

Keep giving Dahlia as many calories as you can.

-Sharon-

Just an RSS kid who grew up

4'6.75 " , afraid to look at the scale (probably around 97#...my ideal weight is

94#)

Gonna be 39 in March!

[Guest guest]

Thanks for the response. I understand where you are coming

from..but, I guess I should clarify. I don't want to withold

food..I was just thinking that maybe she pushes the solids away in

favor of the bottle and if I didn't cave in and give her the bottle

so quickly when she refuses the solids that maybe she would get the

idea...so it was witholding the bottle for a bit that I meant...but,

I've never done this, so it's just a thought. She knows how to eat

baby food off a spoon, but she doesn't like to, so she refuses and

then happily drinks her bottle.

I just don't know when and how she will give up the bottle and the

Pediasure and eat more baby food or real food. Until then she will

just survive on Pediasure.

>

> > Half the time I want to hold back the bottle to see if she'll

> > cave in and eat more food,

>

> Hi Sheryl-

>

> Please don't do that. I ate SO little when I was growing up that

my mother also wondered

> how I stayed alive. Not knowing what to do (or even why I was the

way I was...I wasn't

> diagnosed until I was 15), and with a pedatrician who

said, " she'll eat when she gets

> hungry, " she DID try withholding food once or twice, to see if I

would eventually get

> hungry. I didn't. It just doesn't happen, Sheryl.

>

> In my entire childhood, I remember feeling hungry ONE time and

that was when I was 7

> years old. Didn't feel it again until I was in my teens and began

to have a more normalize

> appetite (of course now, 3 months away from 39 years old, I am

more than making up for

> it <wink>).

>

> Keep giving Dahlia as many calories as you can.

>

> -Sharon-

> Just an RSS kid who grew up

> 4'6.75 " , afraid to look at the scale (probably around 97#...my

ideal weight is 94#)

> Gonna be 39 in March!

[Guest guest]

Hi Sheryl,

We had the same issues with Olivia. I wouldn't worry about

weaning Dahlia from the bottle anytime soon. We're both very lucky

that our kids will eat orally even though the amount seems so

little. Olivia was 12.5-13 lbs at 12 months old and her formula was

her mainstay with very little baby food added in, she just got too

constipated on it and didn't have much interest in it anyway.

I took the bottle away from Olivia on her Third birthday and

regret it to this day! Her formula (Nutramigen) was so horrid

tasting that she wouldn't take it from a cup. On her 3rd birthday

she weighed just over 18lbs, she stayed at 18lbs for just over 2

years and its been just since the convention and Dr. H switching her

meds around that she's finally gained a whole pound and is now 18

lbs. I will say though that we didn't have any inkling or diagnosis

until she was 3.3 years old and if we'd known sooner she would still

be on the bottle at bedtime eventhough she's 5. She just couldn't

get enough calories to gain weight.

This is just our experience...

Keep plugging along and everything will turn out well. You're doing

a great job and Dahlia is so lucky to have you as her mom!!

Leah, mom to 9years and Olivia 5 years, 19lbs, 33 " , RSS, OI,

lots of meds

> >

> > > Half the time I want to hold back the bottle to see if she'll

> > > cave in and eat more food,

> >

> > Hi Sheryl-

> >

> > Please don't do that. I ate SO little when I was growing up

that

> my mother also wondered

> > how I stayed alive. Not knowing what to do (or even why I was

the

> way I was...I wasn't

> > diagnosed until I was 15), and with a pedatrician who

> said, " she'll eat when she gets

> > hungry, " she DID try withholding food once or twice, to see if I

> would eventually get

> > hungry. I didn't. It just doesn't happen, Sheryl.

> >

> > In my entire childhood, I remember feeling hungry ONE time and

> that was when I was 7

> > years old. Didn't feel it again until I was in my teens and

began

> to have a more normalize

> > appetite (of course now, 3 months away from 39 years old, I am

> more than making up for

> > it <wink>).

> >

> > Keep giving Dahlia as many calories as you can.

> >

> > -Sharon-

> > Just an RSS kid who grew up

> > 4'6.75 " , afraid to look at the scale (probably around 97#...my

> ideal weight is 94#)

> > Gonna be 39 in March!

[Guest guest]

Yeah unfortuantely weight is an issue for all children with RSS, but how

does one handle the tooth decay and any future problems with adult teeth

when feeding nightime bottle???? My sister did not have an RSS child but

kept her little one on a bottle until he was three and all his baby teeth

were silver crowned from nightime formulas and milk. He is now 10 and has

had problems with his teeth coming in already. Perhaps offering daytime

bottles at home (limiting at home just to put a restroction if you are

concerned), and then giving a bottle of water at bedtime after the teeth are

brushed so the sugar from another form of liquid substance doesn't harm the

teeth? Another question....Why is giving a bottle so important? How come a

child can't feel comfort and receive nourishment from the new spill proof

cups (well not exactly spill proof with the straws from playtex?

Again, I don't know personally; hopefully offering kindness and support.

Goodluck, any decsion willl be the best you can make for your child.

Jay

Mom to

5 1/2

Mathieu 23 months 20 pounds 30 " unknown diagnosis

[Guest guest]

Hi! How are you! She is a cruisin woman now huh?

I just wanted to pop in here and remind you that Emerence and Dalia

are so much alike - take heart! She is bigger than Emerence was at

her 12 mo check up....Emme was 15 lb 1 oz 27.25 " .

Have you tried baby pastina yet? Some kids, like Emme, just do not

enjoy baby food. They do better with real food chopped and

minced...maybe Dalia is one? Emerence used to love baby pastina

cooked in veggie or chicken broth. Does she like yogurt?

Emerence hasn't grown in several months not one ounce so I too am

watching her a bit frantically..hang in there, hope someone here can

help!

, Mom to soon to be 5 and Emerence, 18 lb 11 oz 28.5 " ,

SGA, pss RSS.

>

> Hi everyone,

>

> Just thought I'd do my monthly post..and read what's going on with

> everyone.

>

> Dalia just turned 1 a couple of weeks ago. She was 15lbs 3oz and

> 27in at her 1 year checkup (the GI doctor scale weighs a lot

heavier

> and she was 15lb 11oz a few weeks before that)...her weight gain

> slowed down a lot since the 9 month visit, but she has been

crawling

> a lot. Also, she started to pull up to standing a couple of weeks

> ago and now pulls up constantly and even cruises a bit.

>

> Her doctors (pediatrician and GI) do not seem worried at all, but I

> worry sometimes. She barely eats, but seems so happy and doesn't

> look skinny. She is the one that Dr. H called chubby in Chicago

and

> said she was overfed at the time. Well now, she is around 25%

> weight for height (I think), so I guess that is good. We are

> dealing with a nutritionist and a ST for feeding. I thought we

were

> making progress with the baby food, but she sort of regressed a

> little and only eats a few spoonfuls reluctantly at a time. She

> only likes her bottle. She lives mainly on Pediasure and only

> drinks around 16-18oz a day of that.

>

> Anyway, I wonder if it is time for Periactin or something else...I

> am torn because she seems to be ok weight for height, but I can't

> believe she can survive on the little bit she eats and also the

> solid foods are pretty much non-existent.

>

> I'm sorry for rambling, but every so often I just wonder if I'm

> doing everything I can. Half the time I want to hold back the

> bottle to see if she'll cave in and eat more food, but I'm afraid

to

> starve her of the Pediasure.

>

> One more thing...we saw a neurologist and a new endocrinologist

> recently. The neurologist gave her a clean bill of health and the

> endo said she looks fine and come back in a year to talk GH)

>

>

> Sheryl (mom to Dalia, 1 year, 15lbs 3oz, 27in, SGA, mild asymmetry)

[Guest guest]

Hi Sheryl,

I know I am late with this reply, I didn't get online yesterday. But I

wanted to ask if Dalia has reflux? My son Henry at that age nursed very well

but

did want to try any real food. At the time I had no idea he was suffering

from reflux (he never vomited once) but after it was diagnosed ( at age 2 ) it

made sense that he didn't want anything going down his throat that had texture

because of the pain.

Today his reflux is under control but he certainly doesn't understand that.

He still associates eating food with pain. Kids are smart little things even

as infants and can figure out what they need to make themselves be comforted.

At 4 yrs old he still eats the same foods he did at 1 year and our quest to

get him to try new foods continues.

Henry RSS, 4yrs

nonRSS 8yrs