Everybody's getting fat but the baby!

[Guest guest]

Hi everybody!

We/I just joined - my name is , we have a 10 month

old daughter Eleanor with CF. Our older children, Jack -

4 and - 6, do not have CF. We live

in a south suburb of Chicago.

Can someone help me with food for 10 month old baby who

insists on feeding herself? Unfortunately she doesn't

seem to have as much of a sweet tooth as my big kids

have, and cheese is losing its charm.

What I'm finding is that I have to keep new things

coming or she gets bored - I need more ideas - we just

can't seem to break the 20th percentile. I'm pretty sure

her enzymes are right based on her stools...

What works?

[Guest guest]

Welcome! I sure can help...my kids always refused baby foods for the

most part, and only ate what they could feed themselves from the very

beginning.

We did avocado slices, lentil stew, brown rice, yogurt, oatmeal,

well-cooked carrot slices, steamed apple, meat that was pulled or

chopped into tiny bites, and banana. My babies both were able to stick

their hands in the yogurt and suck it off their hands and we let them

do this but also put a spoon alongside. Pretty soon they were

spoonfeeding themselves.

For calories, avocado has lots of fat. We also use flax seed oil in

oatmeal and on salads and veggies for extra fats.

Good luck! Do you think maybe she is just at her genetic potential at

the 20th percentile? Is the rest of your family on the small side?

)O(

mama to , 2yo, wCF and alpha-1

and to , 4 yo, w/alpha-1 but no CF

Everybody's getting fat but the baby!

Hi everybody!

We/I just joined - my name is , we have a 10 month

old daughter Eleanor with CF. Our older children, Jack -

4 and - 6, do not have CF. We live

in a south suburb of Chicago.

Can someone help me with food for 10 month old baby who

insists on feeding herself? Unfortunately she doesn't

seem to have as much of a sweet tooth as my big kids

have, and cheese is losing its charm.

What I'm finding is that I have to keep new things

coming or she gets bored - I need more ideas - we just

can't seem to break the 20th percentile. I'm pretty sure

her enzymes are right based on her stools...

What works?

[Guest guest]

We'll try it!

> MACARONI AND CHEESE!!!!!!!!! My son wcf was put on big people at nine months

> because of the higher nutritional values. Anything she can chew would

> probably be ok.

>

>

> mom to jeremiah 3wcf and brenne 7wocf

>

>

>

>

>

>

> >Wrom: GJSNBOHMKHJYFMY

> >Reply-To: cfparents

> >To: cfparents

> >Subject: Everybody's getting fat but the baby!

> >Date: Sun, 27 Oct 2002 15:02:19 +0000

> >

> >Hi everybody!

> >

> >We/I just joined - my name is , we have a 10 month

> >old daughter Eleanor with CF. Our older children, Jack -

> >4 and - 6, do not have CF. We live

> >in a south suburb of Chicago.

> >

> >Can someone help me with food for 10 month old baby who

> >insists on feeding herself? Unfortunately she doesn't

> >seem to have as much of a sweet tooth as my big kids

> >have, and cheese is losing its charm.

> >

> >What I'm finding is that I have to keep new things

> >coming or she gets bored - I need more ideas - we just

> >can't seem to break the 20th percentile. I'm pretty sure

> >her enzymes are right based on her stools...

> >

> >What works?

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

>

>

> _________________________________________________________________

> Choose an Internet access plan right for you -- try MSN!

> http://resourcecenter.msn.com/access/plans/default.asp

>

>

>

> PLEASE do not post religious emails to the list.

>

>

> -------------------------------------------

>

>

> The opinions and information exchanged on this list should

> IN NO WAY

> be construed as medical advice.

>

> PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS.

>

> --------------------------------------------------

>

>

>

[Guest guest]

One thing we found that worked awsome was oatmeal. We got the regular

non-flavored, then put in half and half and whole whipping cream along with

some brown sugar. It's rather sweet though. We were told to add half and

half and whole whipping cream to everything we could, even her bottles.

This helped yolo put on the pounds.

Jen A. mom to 4, Yolo 2 1/2 and Phynix 6 months all w/cf.

>From: blruf@...

>Reply-To: cfparents

>To: cfparents

>Subject: Re: Everybody's getting fat but the baby!

>Date: Mon, 28 Oct 2002 03:42:42 +0000

>

>We'll try it!

> > MACARONI AND CHEESE!!!!!!!!! My son wcf was put on big people at nine

>months

> > because of the higher nutritional values. Anything she can chew would

> > probably be ok.

> >

> >

> > mom to jeremiah 3wcf and brenne 7wocf

> >

> >

> >

> >

> >

> >

> > >Wrom: GJSNBOHMKHJYFMY

> > >Reply-To: cfparents

> > >To: cfparents

> > >Subject: Everybody's getting fat but the baby!

> > >Date: Sun, 27 Oct 2002 15:02:19 +0000

> > >

> > >Hi everybody!

> > >

> > >We/I just joined - my name is , we have a 10 month

> > >old daughter Eleanor with CF. Our older children, Jack -

> > >4 and - 6, do not have CF. We live

> > >in a south suburb of Chicago.

> > >

> > >Can someone help me with food for 10 month old baby who

> > >insists on feeding herself? Unfortunately she doesn't

> > >seem to have as much of a sweet tooth as my big kids

> > >have, and cheese is losing its charm.

> > >

> > >What I'm finding is that I have to keep new things

> > >coming or she gets bored - I need more ideas - we just

> > >can't seem to break the 20th percentile. I'm pretty sure

> > >her enzymes are right based on her stools...

> > >

> > >What works?

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> >

> >

> > _________________________________________________________________

> > Choose an Internet access plan right for you -- try MSN!

> > http://resourcecenter.msn.com/access/plans/default.asp

> >

> >

> >

> > PLEASE do not post religious emails to the list.

> >

> >

> > -------------------------------------------

> >

> >

> > The opinions and information exchanged on this list should

> > IN NO WAY

> > be construed as medical advice.

> >

> > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

>TREATMENTS.

> >

> > --------------------------------------------------

> >

> >

> >

[Guest guest]

Hi ..

We have always given our kids with CF boost plus...straight from the

can with a straw and call it a shake. You can also make fancy ice

cream concoctions with whole whipping cream and add peanutbutter (use

B&J ice cream...it is highest in calories). Also, my hubby bought a

fryer and started frying everything (chicken nuggest, etc) so it would

contain more fat.

Take care,

Jen

Mommy of 7, 3 with CF

> Hi everybody!

>

> We/I just joined - my name is , we have a 10 month

> old daughter Eleanor with CF. Our older children, Jack -

> 4 and - 6, do not have CF. We live

> in a south suburb of Chicago.

>

> Can someone help me with food for 10 month old baby who

> insists on feeding herself? Unfortunately she doesn't

> seem to have as much of a sweet tooth as my big kids

> have, and cheese is losing its charm.

>

> What I'm finding is that I have to keep new things

> coming or she gets bored - I need more ideas - we just

> can't seem to break the 20th percentile. I'm pretty sure

> her enzymes are right based on her stools...

>

> What w

[Guest guest]

Alpha-1 is actually another genetic disorder that is inherited in the

same way as CF (autosomal recessive -- Matt and I are carriers of the

gene). It is the main cause for hereditary emphysema...like when people

get emphysema even though they have never or rarely smoked. It can also

cause liver cirrhosis, even in the absence of drinking. Sometimes babies

born with it need liver transplants in the first few years of life.

Usually you either need a transplant very early in life, or in middle

age or later. More info is at www.alphaone.org and www.alpha1.org. It's

about as rare as CF.

As you might guess, it's not a great combo to have with CF. Just bad

luck -- 1 in 9 million, we've been told. is double df508 as well,

and did not have meconium ileus. Despite all the bad luck as far as

genetics, he's doing remarkably well -- does not culture anything, is

very active, no lung involvement yet , and has just passed

the 50th percentile in height and weight!

As for genetics...I'm not sure either, in terms of 's potential.

It's hard to know. He has always lagged behind his sister, who is beyond

the 95th percentile, though she was born smaller (7 lb 5 oz, and he was

8 lb 6 oz at birth). I will say it has taken from 10 months to 26 months

for us to go from below the 5th to just above the 50th percentile. See,

my brother, who's now 16, was always at the 25th percentile. Still is.

He is just smaller than average genetically.

I guess I just thought of one other thing that could help you. What does

her growth curve look like? 's goes up steeply -- meaning you can

see he's making up for the months of malabsorption he suffered. If she

is kind of following a similar curve to the ones drawn on the charts,

she's probably just fine. If like you said, she has no fat in or bulk to

her stool, she is probably gaining as she's supposed to. Although extra

calories can't hurt!

)O(

mama to , 2yo, wCF and alpha-1

and to , 4 yo, w/alpha-1 but no CF

RE: Everybody's getting fat but the baby!

-

You ask good questions, but the actually, I'm not sure-

My husband and I are not big people I'm 5'5 " he's 5'10 " ,

but my first two were such huge babies, I ran across a

post-it I kept from my son's visits - he was 25lbs at

this age- Eleanor's almost 18lbs.

Can I ask you what alpha-1 is, and why is it significant?

Is it another genetic marker?

We were told Ellie has two copies of DF508. And I think

(from reading) she may also have a defect on the 19th

chromosome because she had meconium ileus.

Thanks for your great response,

>

[Guest guest]

Alpha-1 is actually another genetic disorder that is inherited in the

same way as CF (autosomal recessive -- Matt and I are carriers of the

gene). It is the main cause for hereditary emphysema...like when people

get emphysema even though they have never or rarely smoked. It can also

cause liver cirrhosis, even in the absence of drinking. Sometimes babies

born with it need liver transplants in the first few years of life.

Usually you either need a transplant very early in life, or in middle

age or later. More info is at www.alphaone.org and www.alpha1.org. It's

about as rare as CF.

As you might guess, it's not a great combo to have with CF. Just bad

luck -- 1 in 9 million, we've been told. is double df508 as well,

and did not have meconium ileus. Despite all the bad luck as far as

genetics, he's doing remarkably well -- does not culture anything, is

very active, no lung involvement yet , and has just passed

the 50th percentile in height and weight!

As for genetics...I'm not sure either, in terms of 's potential.

It's hard to know. He has always lagged behind his sister, who is beyond

the 95th percentile, though she was born smaller (7 lb 5 oz, and he was

8 lb 6 oz at birth). I will say it has taken from 10 months to 26 months

for us to go from below the 5th to just above the 50th percentile. See,

my brother, who's now 16, was always at the 25th percentile. Still is.

He is just smaller than average genetically.

I guess I just thought of one other thing that could help you. What does

her growth curve look like? 's goes up steeply -- meaning you can

see he's making up for the months of malabsorption he suffered. If she

is kind of following a similar curve to the ones drawn on the charts,

she's probably just fine. If like you said, she has no fat in or bulk to

her stool, she is probably gaining as she's supposed to. Although extra

calories can't hurt!

)O(

mama to , 2yo, wCF and alpha-1

and to , 4 yo, w/alpha-1 but no CF

RE: Everybody's getting fat but the baby!

-

You ask good questions, but the actually, I'm not sure-

My husband and I are not big people I'm 5'5 " he's 5'10 " ,

but my first two were such huge babies, I ran across a

post-it I kept from my son's visits - he was 25lbs at

this age- Eleanor's almost 18lbs.

Can I ask you what alpha-1 is, and why is it significant?

Is it another genetic marker?

We were told Ellie has two copies of DF508. And I think

(from reading) she may also have a defect on the 19th

chromosome because she had meconium ileus.

Thanks for your great response,

>