Re: introduction and comments on diet in cf

[Guest guest]

Hi ,

My son is almost 18 months old. Your story is so interesting.

Zach had reflux and was eating like crazy - every two hours as a

baby. He started Zantac and we added rice cereal to his bottles at

3 months old (1 month adjusted age), but never stopped until right

about 10 months of age. His reflux seemed better, like he had

outgrown it, but it was at ten months that Zach's weight gain just

stopped. I have never connected those two things before. I just

assumed everything was cf related. Zach gained two pounds right

after starting enzymes and now has stalled again. However, he was

mostly still on bottles at diagnosis and we quickly weaned him off

bottles to solid food. We have been pushing high fat food at Zach

since his diagnosis because that was what the nutritionist really

talked about during Zach's first hospitalization. I wonder if we

have gone really overboard. I would like to hear more about Henry's

diet. Bagels might be tough for Zach to chew, but I will give them

a try. Can Henry digest pasta well? Zach passes macaroni as is

(sorry so gross). What about white rice?

Welcome to the list! I am glad to hear Henry is doing so well. I

hope Zach can hit the 75th percentile someday.

Sara

> Hello all!

> I joined the list a month or so ago and mostly have been lurking.

The recent discussions about weight gain have interested me.

>

> Our story is that at about 2 months old our son Henry was

diagnosed with reflux. He ate every hour, for half an hour. at 2

months he was eating over 30 oz. of formula a day and by 4 months,

well over 40. We were going through super sized similac every other

day at that point and were at 300.00 mo. for formula. At four months

due to what the doctor saw as reflux only, we were told to add 1

TBLS. of rice cereal per 2 oz. of formula. After gaining a little

over a pound a month, he gained a pound in a week, reaching the 10th

percentile and in less than a month jumped to the 25th percentile

(for weight). He was not yet diagnosed, this shift to a high

carbohydrate diet allowed him to " catch up " , and delayed his

diagnosis. I am leaving out a lot of details, he was diagnosed at

5.5 months.

>

> I am telling this story to introduce us, but to also mention that

a high carbohydrate diet may help some kids with weight gain

problems. Right after beginning enzymes, Henry stalled in gaining

weight starting at 9 months for about 6 months. He started gaining

again after pushing a lot of juice and fruit and concentrating his

formula. As far as high fat foods, he runs into a lot of problems

with french fries. They largely seem to pass through undigested and

the amount of enzymes we give for a meal 4-5 ultrase regular, don't

seem to be enough (we were warned by some doctors not to go too much

higher). We suspect that french fries have lead to some intestinal

obstruction (dios) so we are currently avoiding them. We are giving

him the veggie sticks snack food that they sell in the natural food

section, he seems to like them as well and they look like fries.

>

> I am wondering how much research has been done in diet with cf.

Henry is in the 75th percentile for weight now, steadily gaining,

but his favorite foods are fresh fruit, wheat toast and bagels. We

give him VRUIT to make up for the avoidance of vegetables. He does

eat cheese and drinks milk, but not tons of fat otherwise.

>

> I will end here and welcome any comments or feedback.

>

> Robbins

> mom of Henry 19.5 months with cf

>

>

>

[Guest guest]

Thanks for the info. I hadn't thought of grilled cheese. I loved

that as a kid. Zach seems to have some lactose intolerance, but

does ok with some cheese. Yogurt seems to bother him. Do you ever

feed Henry scrambled eggs? Zach loves eggs.

I feed Zach fruit only at the end of meals because I want him to eat

something fattening first. I never thought of just giving him fruit

only, but if it works, it is worth a try.

I will try toasting bagels and cutting them.

Great ideas! Thanks.

Sara

> Sara,

> Ahh, chewing. It might be the age, but Henry doesn't chew very

well either.

> I toast and then cut the bagels into narrow strips and then across

again to

> make little squares. And I make sure they seem soft and fresh, not

too

> spongy or tough. He did have an easier time with homemade french

fries,

> they seemed to digest. He pretty much swallowed french fries

whole, probably

> adding to the digestion problem! He hasn't touched mac and cheese

since 11

> mos. At that point I processed or mashed it well. It seemed to be

digested.

> White rice he ate a couple times and now passes on it. No

spaghetti either.

> Mostly wheat bread, and all types of crackers. If you hand him a

whole piece

> of ripe fruit, he does really well with it... Lots of grilled

cheese cut

> into little tiny squares.

>

> Diet is always a concern, isn't it? We keep worrying that his diet

is too

> limited, but he seems to be doing well.

>

> Hope this helps,

>

>

[Guest guest]

Sara,

Ahh, chewing. It might be the age, but Henry doesn't chew very well either.

I toast and then cut the bagels into narrow strips and then across again to

make little squares. And I make sure they seem soft and fresh, not too

spongy or tough. He did have an easier time with homemade french fries,

they seemed to digest. He pretty much swallowed french fries whole, probably

adding to the digestion problem! He hasn't touched mac and cheese since 11

mos. At that point I processed or mashed it well. It seemed to be digested.

White rice he ate a couple times and now passes on it. No spaghetti either.

Mostly wheat bread, and all types of crackers. If you hand him a whole piece

of ripe fruit, he does really well with it... Lots of grilled cheese cut

into little tiny squares.

Diet is always a concern, isn't it? We keep worrying that his diet is too

limited, but he seems to be doing well.

Hope this helps,

Re: introduction and comments on diet in cf

> Hi ,

> My son is almost 18 months old. Your story is so interesting.

> Zach had reflux and was eating like crazy - every two hours as a

> baby. He started Zantac and we added rice cereal to his bottles at

> 3 months old (1 month adjusted age), but never stopped until right

> about 10 months of age. His reflux seemed better, like he had

> outgrown it, but it was at ten months that Zach's weight gain just

> stopped. I have never connected those two things before. I just

> assumed everything was cf related. Zach gained two pounds right

> after starting enzymes and now has stalled again. However, he was

> mostly still on bottles at diagnosis and we quickly weaned him off

> bottles to solid food. We have been pushing high fat food at Zach

> since his diagnosis because that was what the nutritionist really

> talked about during Zach's first hospitalization. I wonder if we

> have gone really overboard. I would like to hear more about Henry's

> diet. Bagels might be tough for Zach to chew, but I will give them

> a try. Can Henry digest pasta well? Zach passes macaroni as is

> (sorry so gross). What about white rice?

> Welcome to the list! I am glad to hear Henry is doing so well. I

> hope Zach can hit the 75th percentile someday.

> Sara

>

>

>

> > Hello all!

> > I joined the list a month or so ago and mostly have been lurking.

> The recent discussions about weight gain have interested me.

> >

> > Our story is that at about 2 months old our son Henry was

> diagnosed with reflux. He ate every hour, for half an hour. at 2

> months he was eating over 30 oz. of formula a day and by 4 months,

> well over 40. We were going through super sized similac every other

> day at that point and were at 300.00 mo. for formula. At four months

> due to what the doctor saw as reflux only, we were told to add 1

> TBLS. of rice cereal per 2 oz. of formula. After gaining a little

> over a pound a month, he gained a pound in a week, reaching the 10th

> percentile and in less than a month jumped to the 25th percentile

> (for weight). He was not yet diagnosed, this shift to a high

> carbohydrate diet allowed him to " catch up " , and delayed his

> diagnosis. I am leaving out a lot of details, he was diagnosed at

> 5.5 months.

> >

> > I am telling this story to introduce us, but to also mention that

> a high carbohydrate diet may help some kids with weight gain

> problems. Right after beginning enzymes, Henry stalled in gaining

> weight starting at 9 months for about 6 months. He started gaining

> again after pushing a lot of juice and fruit and concentrating his

> formula. As far as high fat foods, he runs into a lot of problems

> with french fries. They largely seem to pass through undigested and

> the amount of enzymes we give for a meal 4-5 ultrase regular, don't

> seem to be enough (we were warned by some doctors not to go too much

> higher). We suspect that french fries have lead to some intestinal

> obstruction (dios) so we are currently avoiding them. We are giving

> him the veggie sticks snack food that they sell in the natural food

> section, he seems to like them as well and they look like fries.

> >

> > I am wondering how much research has been done in diet with cf.

> Henry is in the 75th percentile for weight now, steadily gaining,

> but his favorite foods are fresh fruit, wheat toast and bagels. We

> give him VRUIT to make up for the avoidance of vegetables. He does

> eat cheese and drinks milk, but not tons of fat otherwise.

> >

> > I will end here and welcome any comments or feedback.

> >

> > Robbins

> > mom of Henry 19.5 months with cf

> >

> >

> >

[Guest guest]

Yogurt bothers Henry too. Interesting. At first it didn't, and then twice he

seemed to throw up after yogurt. We haven't fed Henry eggs, but we should

try. He ate his first banana last week. He handed my husband a banana and

then proceeded to eat pretty much the whole thing. Previously he wouldn't

touch them. I think this is typical of toddlers......

Thanks for your suggestions as well,

Re: introduction and comments on diet in cf

> Thanks for the info. I hadn't thought of grilled cheese. I loved

> that as a kid. Zach seems to have some lactose intolerance, but

> does ok with some cheese. Yogurt seems to bother him. Do you ever

> feed Henry scrambled eggs? Zach loves eggs.

> I feed Zach fruit only at the end of meals because I want him to eat

> something fattening first. I never thought of just giving him fruit

> only, but if it works, it is worth a try.

> I will try toasting bagels and cutting them.

> Great ideas! Thanks.

> Sara

>

> > Sara,

> > Ahh, chewing. It might be the age, but Henry doesn't chew very

> well either.

> > I toast and then cut the bagels into narrow strips and then across

> again to

> > make little squares. And I make sure they seem soft and fresh, not

> too

> > spongy or tough. He did have an easier time with homemade french

> fries,

> > they seemed to digest. He pretty much swallowed french fries

> whole, probably

> > adding to the digestion problem! He hasn't touched mac and cheese

> since 11

> > mos. At that point I processed or mashed it well. It seemed to be

> digested.

> > White rice he ate a couple times and now passes on it. No

> spaghetti either.

> > Mostly wheat bread, and all types of crackers. If you hand him a

> whole piece

> > of ripe fruit, he does really well with it... Lots of grilled

> cheese cut

> > into little tiny squares.

> >

> > Diet is always a concern, isn't it? We keep worrying that his diet

> is too

> > limited, but he seems to be doing well.

> >

> > Hope this helps,

> >

> >

>

>

>

>

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

> 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]

hello my name is Ashauna. My son Colgan has been diagnosed with reflux

as well. It seems though that so many of the things that I am reading

in the messages these last couple of days are different than my sons. I

hear a lot about the babies wanting to eat all of the time. My son will

not hardly eat anything. He has been drinking 23 ozs of (pregestimil 24

cal. ) since he was 3 1/2 months old. He is now 7 months.

I am wondering if he is having a problem with the formula and

this is causing all of the discomfort while eating. Honestly the only

time that I can get my baby to eat is when he is asleep. It kills me

knowing that he is not getting enough to gain weight. As of right now

he is 14lbs 12 ozs. Still very negative in the percentile of growth

chart.

Perhaps you and or anyone out there may have some suggestions.

Thanks,

( and I am so glad to hear that your son Henry is doing so well 75%

that is great. One day I will get Colgan there we just have to figure

this little one out )

[Guest guest]

Hi Ashauna,

Welcome to the group! My son Zach was born with a meconium ileus

and had reflux as a baby. They gave him Zantac and we put A LOT of

cereal in his bottle. Check with your CF doc to see if this is ok.

We did not know Zach had CF until he was 13 months old and he had

already started solid foods by then, so I really do not have much

advice about 7 month olds. Zach had a terrible time with soy

formula. He was having 20 bowel movements a day - no exaggeration.

You might want to try different formulas. Also, there are ways to

increase the calories in formula by preparing it differently, but

check with your doctor about doing this. I am really not sure how

this is done.

Sara - mommy to Zach 18 months on Friday

My son will

> not hardly eat anything. He has been drinking 23 ozs of

(pregestimil 24

> cal. ) since he was 3 1/2 months old. He is now 7 months.

> I am wondering if he is having a problem with the

formula and

> this is causing all of the discomfort while eating. Honestly the

only

> time that I can get my baby to eat is when he is asleep. It kills

me

> knowing that he is not getting enough to gain weight. As of right

now

> he is 14lbs 12 ozs.

[Guest guest]

Hi Ashauna,

With Henry we had started on Similac and I do think it bothered his stomach.

At two months we were told that formula was not the problem, he was not

showing the signs for intolerance. But when other things weren't helping, we

tried Nutramigen, Pregestimil, and another formula. He wouldn't eat them.

After two feedings, he was threatening to never eat again. We switched to

Good Start, which is supposed to be easier to digest, at the same time that

we started the rice cereal (1 tbls. per 2 oz.) He didn't like good start on

it's own, but did like it with rice cereal. Making a nipple to allow this to

safely go through was a difficult thing.....but we finally figured out a

way.. could tell you if your doctor suggests rice cereal. We were told by a

few doctors that good start really wasn't any different than similac, but

when we tried similac again, he was uncomfortable. We switched back to good

start. We stopped bottles and formula at about 15 months.

If you want to give me more info about other things you are feeding him, I

could offer other suggestions.

Re: introduction and comments on diet in cf

> hello my name is Ashauna. My son Colgan has been diagnosed with reflux

> as well. It seems though that so many of the things that I am reading

> in the messages these last couple of days are different than my sons. I

> hear a lot about the babies wanting to eat all of the time. My son will

> not hardly eat anything. He has been drinking 23 ozs of (pregestimil 24

> cal. ) since he was 3 1/2 months old. He is now 7 months.

> I am wondering if he is having a problem with the formula and

> this is causing all of the discomfort while eating. Honestly the only

> time that I can get my baby to eat is when he is asleep. It kills me

> knowing that he is not getting enough to gain weight. As of right now

> he is 14lbs 12 ozs. Still very negative in the percentile of growth

> chart.

> Perhaps you and or anyone out there may have some suggestions.

>

> Thanks,

> ( and I am so glad to hear that your son Henry is doing so well 75%

> that is great. One day I will get Colgan there we just have to figure

> this little one out )

>

>

>

>

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

> 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]

Thanks for the reply.

I clinic on 11th so hopefully I will get answers

Ashauna

[Guest guest]

,

He is on pregestimil. Has been since born. Other than that he

eats regular baby food. Mostly fruits. I have a hard time getting him

to eat others. I have been mixing the fruits with veggis and amazingly

he is eating that a little.

He has rice cereal ( 1 tbls. per ounce ) it is like drinking mud.

I may as well just cut the entire top of the nipple of for him

Anyways, it almost seems like he is more interested in eating what I am

eating but how to get it to smooth texture is beyond me. I don't even

know if this is ok for his stomach after such a rough start with it.

If you have any ideas please let me know

Thanks

Ashauna

[Guest guest]

Ashauna,

In addition to the other suggestions, there are a number of ways to

increase calories for an infant. I would definately look into increasing

the calories in his formula, your doctor should be able to provide the

formula to do this. If not, I am sure someone on the list knows. My

daughter is now 3 years old and developed severe eating problems around 7

months. At about 13 months, she had to be hospitalized for total refusal

to eat or drink. She was not on the weight charts and was hardly peeing

in her diaper at all. She was started on an NG tube and over a period of

time slowly begain eating again. Her weight is now near the 50th

percentile. Her last visit, she lost weight but other than that she has

really put on a lot of weight. She still has a lot of eating problems.

She isn't real good at chewing, she tends to vomit because she doesn't

chew things well enough and then when she swallows it gets caught in her

throat. As a result, she eats mainly pureed foods. She still has acid

reflux and her problems with vomiting go up and down. However, overall

she is doing well.

So ... how did we get from there to here. Well, first of all, we add in

extra calories whereever we can. Ask his doctor about putting butter or

margarine in his food. We add this to all of Emma's meats and veggies.

You can add in a supplement such as Scandical or Duocal as well. The

doctor should be able to recommend a supplement. Our daughter is seen

regularly by the feeding team at Children's Hospital of Philadelphia and

they made several recommendations. One of the big recommendations was to

not feed her any baby food and to simply puree table foods instead. They

indicated that taste of jarred baby food is very mild and if you want

them to ever switch to eating regular food, they need to get used to the

taste of it and that jarred foods do not have enough taste to make them

have a desire to eat. I don't know how true this is but we puree all of

Emma's foods. We make everything really smooth, mainly using milk (you

could use formula since he is to young for milk???) We add bananas to

many of her fruits to add calories (bananas are very calorie dense) and

to thicken them up while still keeping them smooth. We do all of this in

a blender at the highest speed. My daughter is on night feeds but that

is primarily because she still hates drinking. She gets most of her

calories from her pureed food. We feed her four meals a day and we feed

her the exact same amount at each meal otherwise she vomits. Any

variations in the routine tends to cause more vomiting in general. It's

a science and we had to figure out what worked for her which can take a

while.

I could go on and on with advise. If you have any questions, let me

know. We definately have experience with problems eating.

Good Luck!

- mom to Emma 3 years old w/cf and reflux and Isabelle 5 years

wo/cf

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[Guest guest]

Questions>>>>

When did you start feeding Emma adult table foods? My son wants

everything that I eat but I am scared to give it to him. I am afraid

because he was born with meconium peritinitis and had to have an

operation. Perhaps you have talked with doc's about reactions with

digestion.

Colgan will eat sometimes but very little and with huge fight

usually. I cry sometimes because I wonder if it is hurting him and this

is the way he lets me know.

He also vomits very easily if he eats even one bite to much. I

have been giving him 4 oz bottles now since he was 2 months old and that

is all that he can handle. Only in the morning and right before bed

will he take 5 1/2 ounces. There definitely is a real science to all of

these babies and their eating habits.

You said you use the blender. I have tried that and for some

reason it is really not getting it soft enough. Perhaps my blender is

not working well enough. Did you encounter this?

Also was your daughter tested for reflux and does she take meds at all?

My son has not been tested yet, but they just keep saying that he has it

and have him on the meds for this.

Somedays I really just want to scream. I am so weary from fighting what

has so far been a loosing battle.

I am also scared that they will put him on tube feedings. I

know that my doc is getting concerned. I asked him to give me a little

more time to work with him before we did this but I just don't know if I

am doing him more harm. Was this a difficult step for you and Emma?

Well. I am sure that I have drained you for the evening. Thank you for

everything

Ashauna mother of 2 ( 5 yr old w/ocf and 7 month old w/cf

[Guest guest]

I know this wasn't addressed to me, but we started letting Patti (2.5 wcf) have

table foods as soon as she tried to grab them. (she sat on our lap at the table

for meal time) We never went the pureed route because she was such a routine

kind of kid that I worried that she would never eat them any other way. Instead

we cut them into pieces that were extreamly tiny and fed her a bite when we took

one ourselves. Kind of the baby bird approach I guess. :-) We did make sure

her stomach was empty around supper time though. That way if she gaged there

wouldn't be a big throw up scene. If she did gag/ puke through the middle or

end of the meal we would just say matter of factly, " Oops, you puked. Here let

me clean you up and I'll get another plate. " The first several times we did

this she was very skeptical. Now at 2.5 she'll say the oops part herself and

ask for another plate. She nearly freaked out the waitress at Golden Corral the

last time we were there by having a huge vertical vomit and then asking them for

another plate. :-)

I know this approach doesn't work for every one, but it is another route to try.

Dawn mom of 4, 7 and under, the youngest wcf

Re: introduction and comments on diet in cf

Questions>>>>

When did you start feeding Emma adult table foods? My son wants

everything that I eat but I am scared to give it to him. I am afraid

because he was born with meconium peritinitis and had to have an

operation. Perhaps you have talked with doc's about reactions with

digestion.

Colgan will eat sometimes but very little and with huge fight

usually. I cry sometimes because I wonder if it is hurting him and this

is the way he lets me know.

He also vomits very easily if he eats even one bite to much. I

have been giving him 4 oz bottles now since he was 2 months old and that

is all that he can handle. Only in the morning and right before bed

will he take 5 1/2 ounces. There definitely is a real science to all of

these babies and their eating habits.

You said you use the blender. I have tried that and for some

reason it is really not getting it soft enough. Perhaps my blender is

not working well enough. Did you encounter this?

Also was your daughter tested for reflux and does she take meds at all?

My son has not been tested yet, but they just keep saying that he has it

and have him on the meds for this.

Somedays I really just want to scream. I am so weary from fighting what

has so far been a loosing battle.

I am also scared that they will put him on tube feedings. I

know that my doc is getting concerned. I asked him to give me a little

more time to work with him before we did this but I just don't know if I

am doing him more harm. Was this a difficult step for you and Emma?

Well. I am sure that I have drained you for the evening. Thank you for

everything

Ashauna mother of 2 ( 5 yr old w/ocf and 7 month old w/cf

[Guest guest]

Thanks for the good little chuckle. I love hearing stories about how

matter of fact children are. You know they just know what we teach

them. At times you wish that you could swallow their words for them,

but then at times like this we realize that you did a good job with

helping them get over a hard thing.

I have been letting him have a few things that are soft. Very

limited though out of fear. Are you firmiliar with many cf issues. I

am also wondering about my oldest so far not DX with cf however I am

very sceptical about this. Do many have vomiting problems? At one

point my son was so bad he did not keep one bite down for a week. there

were many of these times with him. It was never explained by my peds

doc either he just said he would grow out of it. Max has had two neg.

sweat test. I am going to go farther though.

Thanks again for the smile.

Ashauna

[Guest guest]

I watch for calories on baby food however have only found 2 or 3 that

have 90 calories or more. Perhaps you have suggestions.

Boy my doc's going to love me on Monday. I think it will be a long

appointment

Thank you

Ashauna

[Guest guest]

Well, Ashauna--I can feel your pain and frustration over the reflux! Cody

was born with meconium ileus, and required surgery at 36 hours old for it.

He has suffered from reflux since he was born, and has ALWAYS been a

" reluctant feeder " . Guess I would be too, if eating always made me

miserable! I have reflux also, but Aciphex keeps mine under control--but it

was NOTHING like his. I remember when he was a baby we would have to feed

him sitting in his infant seat, and we couldn't touch him at all--not even

to burp him--cuz it wouldn't be just a burp--it would be a projectile vomit

that hit me, the walls, the floor, you name it! We would lay towels down

all around the chair and draped over ourselves, and he would still manage to

overshoot them! We used to wonder when he'd go " Blair " on us and turn

green and his head would start spinning around! LOL

We started on NG feeds from the beginning, as he didn't want to eat. We

only did them at night, but whereas most kids with NG tubes can leave them

in 24/hrs a day for a few days, because of his severity of his reflux we had

to remove it and replace it every night. After a while he didn't even fight

it, and I got pretty darn good at inserting it! When he was 1-1/2 he had

his first Nissen procedure and had a g-tube placed--best decision we ever

made! It was hard at first, and the healing takes time, but it was a

lifesaver, and he actually began to get over his fear of food, and put on

weight and height and even reached the 50th percentile for a while. Then I

began to notice a couple years ago that he was refusing to eat again, and

this winter it got worse. He began to throw up again at night with his tube

feeds, so we rarely did them, as it caused aspiration pneumonia a few times.

He lost weight slowly, and ended up becoming severely malnutritioned by our

next clinic visit. They made the decision to redo his nissen, as his upper

GI showed severe reflux again. They have also now put in a g-j tube instead

(gastric-jejunum MicKey button--one port goes into the stomach and the other

goes through the jejunum). We feed him through his jejunum, which bypasses

the stomach completely, as he also shows evidence of gastric emptying delay,

for which he is also on Reglan. Turns out that the nissen had slipped and

flipped, so it was not doing any good anymore. They had to use a portion of

his stomach to fix it, as the regular tissue that is used was no longer

available, and we have to slowly stretch out his stomach. BUT, the good

news is--no more reflux now! He is beginning to eat again, although he's

not terribly hungry as he is on feeding tube 24 hrs/day at 75cc per j-tube,

and 12 hrs IV lipids/night, so he more than meets his calorie need of

2000/day. He also seems to not have a " thirst trigger " --never has--so it is

hard to get him to drink water, juice, etc. as he never really feels thirsty

until he is actually dehydrated (of course, he doesn't get dehydrated

anymore with all the formula going into him).

Like others have said, try to add calories wherever you can. I will try to

find my recipe for soft banana cookies--they were my boys FAVORITE when they

were little. It's a recipe from a book made for " picky children " --and was

in the infant section. I always made them in the shape of a banana. Also,

banana bread is another one that might be okay--not the dry kind, but a

really moist one. The one I make uses a coconut pudding mix in it (now that

I think of it--I bet Scandishake would work, too!), and lots and lots of

mashed bananas (making some tomorrow as a matter of fact!) It is very easy

to pull off tiny crumbs, and you can even add margarine to it to make it

even more calorie-dense. Scandical or Duocal, as previously mentioned, is

also a good way to add calories in without bulk or substance. You can just

add it into his formula, and it won't change it. Also, you can check about

adding in Microlipids, just a small amount, as each ml has over 4 calories.

It would change the taste a little, though, if you added too much.

Oh, and by the way, have any of you ever TASTED that Pregestimil???? It

smells like vomit to start with, and tastes WORSE!! Cody got a taste of

regular formula when he was 9 months when he took a bottle from another baby

at daycare, and from thereafter he REFUSED to drink Pregestimil. His docs

let me change to Enfamil then, and he did fine on it--actually, he began to

gain weight on it! We still used the Pregestimil for his night feeds

though. Now he is on Peptamen Jr.

Best of luck to you!

S., mom to Cody (7, pwcf, nissen for severe reflux, malnutrition),

DJ (9, nocf), and a (14, nocf)

Re: introduction and comments on diet in cf

> Questions>>>>

>

> When did you start feeding Emma adult table foods? My son wants

> everything that I eat but I am scared to give it to him. I am afraid

> because he was born with meconium peritinitis and had to have an

> operation. Perhaps you have talked with doc's about reactions with

> digestion.

> Colgan will eat sometimes but very little and with huge fight

> usually. I cry sometimes because I wonder if it is hurting him and this

> is the way he lets me know.

> He also vomits very easily if he eats even one bite to much. I

> have been giving him 4 oz bottles now since he was 2 months old and that

> is all that he can handle. Only in the morning and right before bed

> will he take 5 1/2 ounces. There definitely is a real science to all of

> these babies and their eating habits.

> You said you use the blender. I have tried that and for some

> reason it is really not getting it soft enough. Perhaps my blender is

> not working well enough. Did you encounter this?

> Also was your daughter tested for reflux and does she take meds at all?

> My son has not been tested yet, but they just keep saying that he has it

> and have him on the meds for this.

> Somedays I really just want to scream. I am so weary from fighting what

> has so far been a loosing battle.

> I am also scared that they will put him on tube feedings. I

> know that my doc is getting concerned. I asked him to give me a little

> more time to work with him before we did this but I just don't know if I

> am doing him more harm. Was this a difficult step for you and Emma?

> Well. I am sure that I have drained you for the evening. Thank you for

> everything

>

> Ashauna mother of 2 ( 5 yr old w/ocf and 7 month old w/cf

>

>

>

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

> 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]

,

your little man has really been through a lot. I am sorry to be

so stupid I guess but your son is 7 right. Is formula the only thing he

will take? I hope that is not offensive I do not mean it to be. I am

just currious of everything at this stage. By any chance would you be

willing to share your banana bread recipe. Colgan loves cookies and

cake. I imagine if I gave him little enough pieces he would love this.

Thank you for all of your sharing.

Ashauna

I sure hope that Cody is doing wonderful.

[Guest guest]

Yes, he's 7-1/2 years old now--and a bundle of attitude!!!!!!! LOL LOL I

hope that today I get a chance to upload some pics of my kids to the

website--I got a bunch, now I just have to figure out which ones! And no,

formula isn't the only thing he drinks--he eats or drinks anything he wants

to, but since he doesn't " want to " much, we do the formula per his j-tube 24

hrs/day now.

Here's the recipe for my banana bread--MMMMMMMM...(this recipe makes 3

loaves)

2 c. sugar

1 c. vegetable oil

5 eggs

2 c. mashed bananas

2 c. flour

1 tsp. salt

1 tsp. soda

1 heaping tsp. cinnamon

2 pkg. instant coconut cream pudding mix

Beat sugar and oil. Add eggs and bananas. Add dry ingredients. Divide

mixture into three bread pans (or do like I do sometimes and use mini-loaf

and mini-pie pans--perfect for husband's lunch box or school snack!!). Bake

at 350 degrees F for 45-60 minutes. This is a very moist and delicious

banana bread.

Ok, now--in addition, I plugged all the information into my Lifeform

software and got this nutritional breakdown form it (based on the 3 loaves

being 48 servings):

Serving size 36 grams

--------------------------------------------------------------

Amount Per Serving:

Calories 115 Calories from Fat 48

--------------------------------------------------------------

% Daily Value for 2000 cal diet

Total Fat 5.4 g 8%

Saturated Fat 0 g

Cholesterol 22 mg 7%

Sodium 122 mg 5%

Total Carbohydrate 17 g 6%

Dietary Fiber 0 g

Sugars 12 g

Protein 1 g

--------------------------------------------------------------

Vitamin A 0% Vitamin C 1%

Calcium 0% Iron 1%

Well, now I'm off to make MY banana bread!! Later all!

S., mom to Cody (7, pwcf, nissen for severe reflux, malnutrition,

adhd), (DJ (9, nocf), and a (14, nocf)

Re: introduction and comments on diet in cf

> ,

> your little man has really been through a lot. I am sorry to be

> so stupid I guess but your son is 7 right. Is formula the only thing he

> will take? I hope that is not offensive I do not mean it to be. I am

> just currious of everything at this stage. By any chance would you be

> willing to share your banana bread recipe. Colgan loves cookies and

> cake. I imagine if I gave him little enough pieces he would love this.

> Thank you for all of your sharing.

> Ashauna

> I sure hope that Cody is doing wonderful.

>

>

>

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

> 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 Ashauna,

Sorry I haven't responded to your questions sooner. I don't always

check my emails every day. Emma is not eating adult table foods yet.

She is eating pureed table foods. She will eat some regular food here

and there but not enough to sustain her. If your soon wants what you are

eating, I would cut it into small bites and give it to him. Even if he

vomits, you need to encourage the idea of chewing and it's important for

them to investigate foods on their own terms. We were discouraged from

giving Emma any regular table foods at one point because of the vomiting

and she is three and still doesn't chew. I attribute this in part to the

fact that is not capable of chewing a full meal.

Emma had the same issue with getting to full. We spent a lot of time

figuring out a routine of how much she could eat and when. We ended up

starting her off eating 4 ounces of food every three hours, four meals a

day. She was around a 13 months at that point. This helped minimize her

vomiting. She is currently up to 6 ounces of food at a meal and 4 ounces

of carnation instant breakfast. She still eats every three hours, four

times a day. It's a rigorous schedule and a real pain since she still

won't voluntarily eat by her self. However, it's what works best for

Emma.

The key to getting things soft in the blender is adding enough liquid.

Some of the things that we puree are macaroni and cheese (that takes a

lot of milk ... killed a blender by putting too little milk in), ravioli,

beef stew, perogies, chicken nuggets, carrots, spinach, peas, etc and any

kind of fruit. In addition to enough liquid, I find it is easier to

puree most items when they are warm. We tend to puree a lot of things

from cans. Most regular or frozen vegetables are very hard to puree,

they end up very gritty and Emma hated them. The exception to this is

squash and sweet potatoes which puree very nicely. We heat them up

first. Fresh fruit will need to be softened considerably by putting it

in the microwave or steaming it. This works particularly well with

apricots (remove the pits first but you can leave the skin on). There

are some exceptions such as strawberries or very soft pears but if the

fruit is hard, try putting it in the microwave for a while first. We

tend to use a lot of the canned fruits which are already soft.

I also wanted to tell you and everyone else out there who has a child

with problems eating. Do not be afraid of tube feedings. It's a pain at

first but you get used to it and so do they. It was definatelly one of

the best things we did for Emma. I agonized over this possibility for

months. I cried almost a daily basis over Emma's eating problems. I

haven't cried once since we started her on tube feedings, well at least

not about her eating problems. It has helped us so much and Emma doesn't

mind it at all. It was definately something I do not regret doing.

Good Luck with everything. It's not a fun road but you get over it one

bump at a time.

- mom to the butterfly girls Emma 3 years old w/cf and reflux and

Isabelle almost 5 years old wo/cf

________________________________________________________________

The best thing to hit the internet in years - Juno SpeedBand!

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[Guest guest]

,

Thank you for the recipe. I am sure that he will love it. Well he

loves anything he is not supposed to have yet. This little monster. I

don't even think attitude sums it all up for these little buggers.

Boys can't live with them and sure could not live without them.

HAHAHAHAHA

Ashauna ( gonna bake sunday ) Have a Miracle Camp tomarrow.

[Guest guest]

I just wanted to drop a quick line to you. I got message yesterday, but

have been really busy could not respond. The advice you are giving is

working for Colgan. Not drinking formula really but is taking other

stuff. Only took 15 oz formula today. We'll see what the doc says.

Your little Emma sounds so sweet. I imagine that you all have your

hands full, but what a dedicated mother and family she has. you have

been great thanks,

Ashauna ( Good Night ) many dreams of future cures for CF

[Guest guest]

,

Your Lifeform softwear can it be bought anywhere or only certain

places. Sounds like something I might need in the future.

Thanks again for recipe.

Ashauna

[Guest guest]

It is a really great program--you xcan gwet it at www.lifeform.com. You can

plug evwerything in to it--medical records, food, recipes, etc.

Ok--that'sd it--I'm going to gwet a nwewe kweyboarsd tomorrowe!! It'sd

mwesdsding up bigtimwe!! Kidssd musdt havwe sdpillwesd sdomwething sdtixcky

on it! I'm tirwesd of baxcksdpacxing!

S., mom to Cody (7, pwcf, nissen for severe reflux, malnutrition,

ADHD), DJ (9, nocf, asthma, ADD), and a (14, nocf, ADHD)

Re: introduction and comments on diet in cf

> ,

> Your Lifeform softwear can it be bought anywhere or only certain

> places. Sounds like something I might need in the future.

>

> Thanks again for recipe.

> Ashauna

>

>

>

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

> 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]

,

I thought you were typing in some sort of code. HAHAHA gotta

love the kids and liquids huh?

Thanks for info on softwear. As soon as I get computer it may be

something that I invest into.

Right now I only have webtv so it lets me look stuff up and chat and

e-mail that is it.

Ashauna

[Guest guest]

Hi ,

I am far behind with my mail but pleased to see that there is someone else

who favors a high carb diet. Our Fiona (now 6) couldn't digest greater

amounts of fat for a long time (no matter how much enzymes we gave her) and

so we enriched her food (she lived almost completely on baby formula) with

maltodextrine instead of oil.

We kept the high carb diet for five years, until Fiona finally began to eat

normal food instead of baby formula. Fiona still is a picky eater, but it

has gotten much better. And fortunately she gains weight with only 1,000

calories a day.

While a high-fat, high-calorie diet is appropriate for the majority of the

pwcf there are always excemptions from the rule.

Peace

Torsten, dad of Fiona 6wcf and Sebastian newborn wocf

e-mail: torstenkrafft@...

introduction and comments on diet in cf

> Hello all!

> I joined the list a month or so ago and mostly have been lurking. The

recent discussions about weight gain have interested me.

>

> Our story is that at about 2 months old our son Henry was diagnosed with

reflux. He ate every hour, for half an hour. at 2 months he was eating over

30 oz. of formula a day and by 4 months, well over 40. We were going through

super sized similac every other day at that point and were at 300.00 mo. for

formula. At four months due to what the doctor saw as reflux only, we were

told to add 1 TBLS. of rice cereal per 2 oz. of formula. After gaining a

little over a pound a month, he gained a pound in a week, reaching the 10th

percentile and in less than a month jumped to the 25th percentile (for

weight). He was not yet diagnosed, this shift to a high carbohydrate diet

allowed him to " catch up " , and delayed his diagnosis. I am leaving out a lot

of details, he was diagnosed at 5.5 months.

>

> I am telling this story to introduce us, but to also mention that a high

carbohydrate diet may help some kids with weight gain problems. Right after

beginning enzymes, Henry stalled in gaining weight starting at 9 months for

about 6 months. He started gaining again after pushing a lot of juice and

fruit and concentrating his formula. As far as high fat foods, he runs into

a lot of problems with french fries. They largely seem to pass through

undigested and the amount of enzymes we give for a meal 4-5 ultrase regular,

don't seem to be enough (we were warned by some doctors not to go too much

higher). We suspect that french fries have lead to some intestinal

obstruction (dios) so we are currently avoiding them. We are giving him the

veggie sticks snack food that they sell in the natural food section, he

seems to like them as well and they look like fries.

>

> I am wondering how much research has been done in diet with cf. Henry is

in the 75th percentile for weight now, steadily gaining, but his favorite

foods are fresh fruit, wheat toast and bagels. We give him VRUIT to make up

for the avoidance of vegetables. He does eat cheese and drinks milk, but not

tons of fat otherwise.

>

> I will end here and welcome any comments or feedback.

>

> Robbins

> mom of Henry 19.5 months with cf