Re: weight gain problems

[Guest guest]

Crystal,

I am going through similar problems at this moment with my son. He

has weighed between 13.6 and 14.8 for 3 months now and the last two has

remained at 14.8 or right around there. He is only 7 months but shows

no signs of starting to gain any time soon.

He also is on night feeds but at this time only has an NG tube in.

Very frusterating we are going to give it a month longer to see if this

helps he has been on them for almost 3 weeks now. He takes Pregestimil

as he is still young. It seems like I have heard good things about the

PeptaminJR on the list though I am sure they will let you know about it.

I hope that your little one starts gaining weight soon.

Ashauna waiting on MicKey button for my son Colgan wcf.

[Guest guest]

Crystal,

We have had the same problems with our daughter, Piper. She was having a very

hard time gaining weight. She had her Nissen and g-tube placed in Nov. and has

done o-kay with it, but no major jump in weight. Her doctor changed her formula

in May, he put her on 4 oz. Pediasure and 4 oz, Peptamen 1.5 for each feed. We

let her take as much pediasure by mouth as she wants, and the rest goes through

her tube. Well after 3 weeks of her having the pediasure/peptamen she gained

2.2 lbs!!!! Needless to say we were thrilled!!! She was up to 18 lbs 4 oz (I

think) anyway she still iss doing great, I don't know how much she has gained

since then, as we don't go back to clinic until the 11th of this month, but I am

quite certain that it will be a good amount. The only thing that I have found

with the pediasure/peptamen feeds is that if you mix them together, it is too

think to go through the tube, but we also do bolus feeds so it might be

different with a pump. I hope that the peptamen

works for your little Adam.

Oh, and I have NEVER heard of a CF doc being concerned that a CF kid might get

too fat. Just my thought, I think Piper's doc would probably do somersaults

down the hall if she ever got fat : )

Katy

Mom to Austin 4 no CF & Piper 13 months w/CF

[Guest guest]

Hi,

did not really gain much on the peptamin jr. She did much better on

peptamin 1.5, and still takes that. Have you tried bolus feeds instead? Some

kids get too full with an overnight feed to eat in the morning and they do

better with a bolus after each meal. This is what did. (besides I don't

like night feeds for a few reasons- especially if the child doesn't tolerate

them well) She only gets about on can of peptamin 1.5 a day now after dinner.

Hope this helps!

weight gain problems

I'm curious if others have had this much problem (duh, I'm sure you

have!) Did you get past it and how? Adam is 18 monthes old now and

only weighs 16 pounds. In fact, at the beginning of the summer he

weighed 16#10 and now is 16#4 (granted this is two different scales

one in KS and one in VA. We moved in July.) We were doing night time

feedings from Feb to June with pediasure. The GI doc in KS said we

needed to stop sometime in the next 6mo or he'd get too fat!! HA!

Because of a hiatal hernia he wasn't tolerating the feedings well and

because of the move and change in insurance I turned in the old

equipment. We are now starting nightfeedings again -- tonight to be

exact. (oh, he has a mickey button and had a nissen fundoplication in

Feb). This time the docs have him on peptaminJR.

I guess I'd like to know someone else out there has had this problem

and found good results. I am very impressed with our GI doc here. We

are starting with the night feedings and then in a month we will

check progress and possibly try other options as well.

Thanks for reading/listening

Crystal, mom to Adam 18mo wcf, le 3.9yr nocf

[Guest guest]

Well, Crystal--I can definitely empathize with you! Adam is very, very

small for his age! Cody was little, but I believe he was more like about 20

pounds when they did his nissen. Cody has always had trouble with weight

gain, and he is now on 24-hour drip feeds. Cody has gastric emptying delay,

also, in addition to the severe reflux he suffered (he had his second

nissen, or redo, in June). We did great for quite a while after his first

nissen when he was 18 months--he began to move up the growth curve again,

even got some chubby cheeks (on both ends!)! Then a couple years ago he

began to experience slight reflux again, and it got very bad from Christmas

on, and they redid his nissen, which had slipped AND flipped. He is doing

pretty well now, and we have gained about 8-9 pounds since.

What kind of high-cal foods have you been trying with him? What kinds of

enzymes have you tried/do you use? How does his digestion seem? What other

meds is he on--for his bowels, for acid reflux, digestion, etc.?

If you'd like I can send you a few age-appropriate recipes/ideas for

calorie-boosting. Let me know!

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

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

weight gain problems

> I'm curious if others have had this much problem (duh, I'm sure you

> have!) Did you get past it and how? Adam is 18 monthes old now and

> only weighs 16 pounds. In fact, at the beginning of the summer he

> weighed 16#10 and now is 16#4 (granted this is two different scales

> one in KS and one in VA. We moved in July.) We were doing night time

> feedings from Feb to June with pediasure. The GI doc in KS said we

> needed to stop sometime in the next 6mo or he'd get too fat!! HA!

> Because of a hiatal hernia he wasn't tolerating the feedings well and

> because of the move and change in insurance I turned in the old

> equipment. We are now starting nightfeedings again -- tonight to be

> exact. (oh, he has a mickey button and had a nissen fundoplication in

> Feb). This time the docs have him on peptaminJR.

>

> I guess I'd like to know someone else out there has had this problem

> and found good results. I am very impressed with our GI doc here. We

> are starting with the night feedings and then in a month we will

> check progress and possibly try other options as well.

>

> Thanks for reading/listening

> Crystal, mom to Adam 18mo wcf, le 3.9yr nocf

[Guest guest]

--

Adam loves food! He loves the Gerber Graduate snack food, especially

the veggie crackers which have a good amount of fat in them compared

to the other toddler stuff on the market. He also likes stews, so

I've been buying the individual microwave ones, whichever says it has

the most fat. He'll eat about a third of that at a meal. He eats

graham crackers and loves to drink milk (I add 1/4cup dry to every

8oz of liquid whole milk as directed by the nutritionist at our old

clinic.) He LOVES peanut butter, but I'm trying not to overdo it

there. I also mix dry milk with it for a snack. Today for lunch was

piece of buttered toast with p.b. and a slice of cheese on it. He ate

about 1/3 to 1/2 of it with his crackers and milk. He also loves

cheetos! When I went over a days eating with the nutritionist all she

suggested was making sure ALL the bread I give him is buttered, and

try offering ketchup with fries,etc (He's still a little to

uncoordinated for that yet, but I've tried. ick, messy). It seemed to

her that we were doing fairly well. (I understand from LOTS of people

that she is VERY good. In fact the GI doc ordered the night feeds on

her recommendation alone and THEN saw Adam in clinic.)

Any recipes you have would be great. My biggest concern is if the

recipe makes too much can it frozen and used later? My daughter is

off the growth chart on the top end and doesn't need the HIGH

calories that Adam does, just a good balanced diet. (My kids are 2

years and 4 months apart and look more like they are 4+ years apart.

I makes for a LOT of comments....)

AS to the enzymes. He used creon first and it kept increasing on how

many we needed. We switch to ultrase and they worked fine but now

he's maxed out on how many he can have a day and his diapers are

still foul and like peanut butter. (That was even before I started

feeding him peanut butter!! After a month of the night feeds we

see the GI doc again to see what progress has been made and what the

next thing to try is. I think after reading this list I'm going to

ask about pancrecarb enzymes. He is taking 2.5cc of Prilosec TWICE

daily which they say is the max he can have for his body weight.

That's is on the meds.

oh, my last comment, after doing the drip lastnight I think I'm going

to set the machine for intermitent. I'm going to try tonight to have

it pump in about 3oz every hour and see if he realizes his tummy is

full. Last night he STILL woke be up by 1am and took a 4oz bottle of

pediasure on top of the stuff that being pumped it!

Crystal

> Well, Crystal--I can definitely empathize with you! Adam is very,

very

> small for his age! Cody was little, but I believe he was more like

about 20

> pounds when they did his nissen. Cody has always had trouble with

weight

> gain, and he is now on 24-hour drip feeds. Cody has gastric

emptying delay,

> also, in addition to the severe reflux he suffered (he had his

second

> nissen, or redo, in June). We did great for quite a while after

his first

> nissen when he was 18 months--he began to move up the growth curve

again,

> even got some chubby cheeks (on both ends!)! Then a couple years

ago he

> began to experience slight reflux again, and it got very bad from

Christmas

> on, and they redid his nissen, which had slipped AND flipped. He

is doing

> pretty well now, and we have gained about 8-9 pounds since.

>

> What kind of high-cal foods have you been trying with him? What

kinds of

> enzymes have you tried/do you use? How does his digestion seem?

What other

> meds is he on--for his bowels, for acid reflux, digestion, etc.?

>

> If you'd like I can send you a few age-appropriate recipes/ideas for

> calorie-boosting. Let me know!

>

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

malnutrition,

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

>

[Guest guest]

Another suggestion:

Try mixing butter half and half with canola oil for added Omega 3 (essential

fatty acid, deficient in CF). I find it easiest to mix a half pound of

butter at a time with an equal amount of canola oil and store it in a tub in

the refrigerator.

Or, go the Italian route and let your child dip bread (preferably whole

grain) in olive oil (drip some on a plate or in a shallow bowl for dipping).

M

Re: weight gain problems

When I went over a days eating with the nutritionist all she

> suggested was making sure ALL the bread I give him is buttered, and

> try offering ketchup with fries,etc ...

[Guest guest]

Here is a site for some great hi-calorie recipes.

http://personal.nbnet.nb.ca/normap/cfrecipes.htm

I myself have used many of these recipes--I also make him one of my own

things--

SUPER hi-calorie fudge bars:

Take one packet of Chocolate Scandishake (can also use vanilla, and just add

cocoa or Nestle Quik to it--depending on how sweet you like it), mix it with

about 1/2 cup powdered milk, 1/2 cup half and half, and 1/2 cup milk. You

can also add another cup of milk and a packet of chocolate pudding--makes

for a creamier bar. Then I pour them into popsicle molds and freeze

them--Cody LOVES them! I have also made them using vanilla scandishake and

mixed in mandarin oranges; vanilla Scandishake along with pineapple juice,

crushed pineapple, a little coconut, and coconut milk (mmmm--tried those

ones--YUM!); and strawberry scandishake with crushed strawberries in syrup.

These go over VERY well, and don't last long.

Here's a good recipe for hi-cal mini cupcakes:

1 box Pillsbury Butter Recipe Chocolate cake mix

1-1/4 cups water

1/2 cup butter

3 eggs

1/3 pkg Chocolate Scandishake

Mix and bake as usual. Each mini cupcake (should make about 48) will have 70

calories. Sprinkle with a little powdered sugar or put frosting on.

Scandipharm also has a recipe book for Scandishake--I can't find mine at the

moment (it's probably in my cabinet), but you can probably contact them for

it. It has lots of great ideas in it. They also make another product

called Scandical, which is a tasteless shake-on powder you add to drinks or

food for more calories. Cody didn't mind it, but I kept forgetting to use

it!

Another idea is to take the Boost pudding and put it over bananas--Cody's

favorite snack!!

If your kids like cheese crackers, you can take cheddar cheese and melt it

in the microwave until it gets " crispy " --about 1/4 cup of cheese takes a

minute or so. My kids all love these!! For Cody, I don't soak off as much

grease (cheddar cheese is really greasy!). These are much higher in

calories than regular cheese crackers, and yummy!

Here's a few more ideas to add calories.

1. Use 1/2 and 1/2 on his cereal (add an extra enzyme or two for it)

2. Yogurt for snack (the highest calorie kind you can find)

3. Co-co wheats with chocolate chips sprinkled on it (Cody LOVES that!)

4. smores

5. If he doesn't like Scandishake, use Carnation instant Breakfast (mix 1

packet with 1/2 cup whole milk and 1/2 cup ice cream=490 calories)

6. If he can handle them, nuts are a GREAT source of calories--especially

cashews and peanuts. Mix them with raisins for a kind of " trail

mix " .

7. Melt cheese (Cheez Whiz or Velveeta works best) over all his veggies.

8. Dried banana chips--sounds like it would be " healthy " , but actually a

cup=400 calories!

9. The banana bread recipe I sent out again a few days ago is packed with

calories, too. I often bake that in small mini-bread pans or in mini

pie pans--perfect for lunchboxes, taking with in the diaper bag, etc. I

wrap them and freeze them for later, too, as the recipe make a huge batch.

Best wishes getting Adam to gain weight!

Re: weight gain problems

> --

>

> Adam loves food! He loves the Gerber Graduate snack food, especially

> the veggie crackers which have a good amount of fat in them compared

> to the other toddler stuff on the market. He also likes stews, so

> I've been buying the individual microwave ones, whichever says it has

> the most fat. He'll eat about a third of that at a meal. He eats

> graham crackers and loves to drink milk (I add 1/4cup dry to every

> 8oz of liquid whole milk as directed by the nutritionist at our old

> clinic.) He LOVES peanut butter, but I'm trying not to overdo it

> there. I also mix dry milk with it for a snack. Today for lunch was

> piece of buttered toast with p.b. and a slice of cheese on it. He ate

> about 1/3 to 1/2 of it with his crackers and milk. He also loves

> cheetos! When I went over a days eating with the nutritionist all she

> suggested was making sure ALL the bread I give him is buttered, and

> try offering ketchup with fries,etc (He's still a little to

> uncoordinated for that yet, but I've tried. ick, messy). It seemed to

> her that we were doing fairly well. (I understand from LOTS of people

> that she is VERY good. In fact the GI doc ordered the night feeds on

> her recommendation alone and THEN saw Adam in clinic.)

>

> Any recipes you have would be great. My biggest concern is if the

> recipe makes too much can it frozen and used later? My daughter is

> off the growth chart on the top end and doesn't need the HIGH

> calories that Adam does, just a good balanced diet. (My kids are 2

> years and 4 months apart and look more like they are 4+ years apart.

> I makes for a LOT of comments....)

>

> AS to the enzymes. He used creon first and it kept increasing on how

> many we needed. We switch to ultrase and they worked fine but now

> he's maxed out on how many he can have a day and his diapers are

> still foul and like peanut butter. (That was even before I started

> feeding him peanut butter!! After a month of the night feeds we

> see the GI doc again to see what progress has been made and what the

> next thing to try is. I think after reading this list I'm going to

> ask about pancrecarb enzymes. He is taking 2.5cc of Prilosec TWICE

> daily which they say is the max he can have for his body weight.

> That's is on the meds.

>

> oh, my last comment, after doing the drip lastnight I think I'm going

> to set the machine for intermitent. I'm going to try tonight to have

> it pump in about 3oz every hour and see if he realizes his tummy is

> full. Last night he STILL woke be up by 1am and took a 4oz bottle of

> pediasure on top of the stuff that being pumped it!

>

> Crystal

>

>

> > Well, Crystal--I can definitely empathize with you! Adam is very,

> very

> > small for his age! Cody was little, but I believe he was more like

> about 20

> > pounds when they did his nissen. Cody has always had trouble with

> weight

> > gain, and he is now on 24-hour drip feeds. Cody has gastric

> emptying delay,

> > also, in addition to the severe reflux he suffered (he had his

> second

> > nissen, or redo, in June). We did great for quite a while after

> his first

> > nissen when he was 18 months--he began to move up the growth curve

> again,

> > even got some chubby cheeks (on both ends!)! Then a couple years

> ago he

> > began to experience slight reflux again, and it got very bad from

> Christmas

> > on, and they redid his nissen, which had slipped AND flipped. He

> is doing

> > pretty well now, and we have gained about 8-9 pounds since.

> >

> > What kind of high-cal foods have you been trying with him? What

> kinds of

> > enzymes have you tried/do you use? How does his digestion seem?

> What other

> > meds is he on--for his bowels, for acid reflux, digestion, etc.?

> >

> > If you'd like I can send you a few age-appropriate recipes/ideas for

> > calorie-boosting. Let me know!

> >

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

> malnutrition,

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

> >

>

>

>

>

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

> 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]

We deal with weight gain problems with my daughter also. She is 3.5

years old and weighs around 19 lbs. She has a feeding tube which we

use but she just doesn't tolerate enough formula to make her grow.

She has other health problems besides the cf and we are trying to

get them all sorted out to see if we can come up with a solution for

her. I hope that restarting the night feeds will do the trick for

you. I definately wouldn't worry about making him too fat at this

point. Good luck,

Georgianna

> I'm curious if others have had this much problem (duh, I'm sure

you

> have!) Did you get past it and how? Adam is 18 monthes old now and

> only weighs 16 pounds. In fact, at the beginning of the summer he

> weighed 16#10 and now is 16#4 (granted this is two different

scales

> one in KS and one in VA. We moved in July.) We were doing night

time

> feedings from Feb to June with pediasure. The GI doc in KS said we

> needed to stop sometime in the next 6mo or he'd get too fat!! HA!

> Because of a hiatal hernia he wasn't tolerating the feedings well

and

> because of the move and change in insurance I turned in the old

> equipment. We are now starting nightfeedings again -- tonight to

be

> exact. (oh, he has a mickey button and had a nissen fundoplication

in

> Feb). This time the docs have him on peptaminJR.

>

> I guess I'd like to know someone else out there has had this

problem

> and found good results. I am very impressed with our GI doc here.

We

> are starting with the night feedings and then in a month we will

> check progress and possibly try other options as well.

>

> Thanks for reading/listening

> Crystal, mom to Adam 18mo wcf, le 3.9yr nocf