Re: feeding tube and weight gain

[Guest guest]

Hi Louise,

had his tube place October 2001, he gets 750 cc of Peptamen Jr. with 3

tablespoons of Duocal mixed in with it, you can get Duacal from your local

pharmacy, just ask them to order a can, I am not sure of the costs, but if

the doc will write a script for you, your insurance should cover it since it

goes in s tube. also gets 4 ounce bolus feeds during the day,

for lunch if he doesnt eat, and he isnt real fond of eating either, mostly

peanut butter and fluff, and even then maybe a half sandwich. We use a tube

used for venting and a 2 ounce syringe to do the bolus. It takes away some

of the fight to eat if you have an out.

As for the g-tube site, the granulation tissue is the tissue growing because

it wants to heal the stoma, and because the tube is there it cant. We used

to use silver nitrate sticks on it, would burn him, and was horrible. I

found a g-tube site that offered alot of solutions, one that worked great for

us was eucalyptus oil, I got it at Bath and Body works, it is in a brown

bottle with a syringe, it is mixed with safflower oil, I use 4-5 drops of the

oil in about 10ml of lukewarm water, then I use a cotton ball and saturate

it, then I dont have to actually touch the site, is real leary of

anyone touching his tube site, so I just let the water run around it with a

rag under it to keep his clothes dry, it made a big difference, the site isnt

so red now, doesnt seem to ooze as much, and he is much more willing to let

me clean it this way.

Hope all this helps, sometimes things can be so frustrating when you know you

are doing all the right things, and they just dont seem to be working.

Take care, and hugs, is as lucky to have you for a grandma, as you are

to have her.

Take care,

, mommy of 4, 3 wcf, a g-tube and his wonderful personality,

, 17, Caleb, 7, and , 6

[Guest guest]

Hi Louise,

had his tube place October 2001, he gets 750 cc of Peptamen Jr. with 3

tablespoons of Duocal mixed in with it, you can get Duacal from your local

pharmacy, just ask them to order a can, I am not sure of the costs, but if

the doc will write a script for you, your insurance should cover it since it

goes in s tube. also gets 4 ounce bolus feeds during the day,

for lunch if he doesnt eat, and he isnt real fond of eating either, mostly

peanut butter and fluff, and even then maybe a half sandwich. We use a tube

used for venting and a 2 ounce syringe to do the bolus. It takes away some

of the fight to eat if you have an out.

As for the g-tube site, the granulation tissue is the tissue growing because

it wants to heal the stoma, and because the tube is there it cant. We used

to use silver nitrate sticks on it, would burn him, and was horrible. I

found a g-tube site that offered alot of solutions, one that worked great for

us was eucalyptus oil, I got it at Bath and Body works, it is in a brown

bottle with a syringe, it is mixed with safflower oil, I use 4-5 drops of the

oil in about 10ml of lukewarm water, then I use a cotton ball and saturate

it, then I dont have to actually touch the site, is real leary of

anyone touching his tube site, so I just let the water run around it with a

rag under it to keep his clothes dry, it made a big difference, the site isnt

so red now, doesnt seem to ooze as much, and he is much more willing to let

me clean it this way.

Hope all this helps, sometimes things can be so frustrating when you know you

are doing all the right things, and they just dont seem to be working.

Take care, and hugs, is as lucky to have you for a grandma, as you are

to have her.

Take care,

, mommy of 4, 3 wcf, a g-tube and his wonderful personality,

, 17, Caleb, 7, and , 6

[Guest guest]

Hi Louise,

had his tube place October 2001, he gets 750 cc of Peptamen Jr. with 3

tablespoons of Duocal mixed in with it, you can get Duacal from your local

pharmacy, just ask them to order a can, I am not sure of the costs, but if

the doc will write a script for you, your insurance should cover it since it

goes in s tube. also gets 4 ounce bolus feeds during the day,

for lunch if he doesnt eat, and he isnt real fond of eating either, mostly

peanut butter and fluff, and even then maybe a half sandwich. We use a tube

used for venting and a 2 ounce syringe to do the bolus. It takes away some

of the fight to eat if you have an out.

As for the g-tube site, the granulation tissue is the tissue growing because

it wants to heal the stoma, and because the tube is there it cant. We used

to use silver nitrate sticks on it, would burn him, and was horrible. I

found a g-tube site that offered alot of solutions, one that worked great for

us was eucalyptus oil, I got it at Bath and Body works, it is in a brown

bottle with a syringe, it is mixed with safflower oil, I use 4-5 drops of the

oil in about 10ml of lukewarm water, then I use a cotton ball and saturate

it, then I dont have to actually touch the site, is real leary of

anyone touching his tube site, so I just let the water run around it with a

rag under it to keep his clothes dry, it made a big difference, the site isnt

so red now, doesnt seem to ooze as much, and he is much more willing to let

me clean it this way.

Hope all this helps, sometimes things can be so frustrating when you know you

are doing all the right things, and they just dont seem to be working.

Take care, and hugs, is as lucky to have you for a grandma, as you are

to have her.

Take care,

, mommy of 4, 3 wcf, a g-tube and his wonderful personality,

, 17, Caleb, 7, and , 6

[Guest guest]

Louise,

The lump of skin that is sticking out from the tube site is called a

granuloma. Basically, it's tender scar tissue (granulation) which should

be removed. We had major problems with this with Emma. We had to take

her in to have it removed several times. They used silver nitrate to

cauterize it. The last time, it was real bad as any time any pressure

was put on it, it would start to openly bleed (seeping through her shirt

and onto her pants). Finally, our GI nurse had us use a steriod cream

primarily used by psioriosis patients and we applied it directly to the

granuloma only and this made it go away and it hasn't come back since.

If this hadn't worked, they were going to have us use the silver nitrate

at home ourselves which I really didn't want to do. Anyway, it

definately sounds like a granuloma. They need to call her GI doctor or

whoever was responsible for having the tube put in and let them know she

has a granuloma that needs removed.

Is she on any enzymes when she has her night feeds? If she isn't, she

definately should be. The one they usually use is viocase which comes in

power form. You mix it with a little water and put it directly down her

tube using a syringe. If she is on enzymes at night, how often do you

give them. We initially had Emma on the enzymes at the beginning and end

of the feed and then they changed it (I don't remember exactly why at

this point, it was over a year ago) so she gets them in the middle of the

night as well. What type of formula are you giving her? Our daughter is

on Peptamen Jr. This is especially developed for night feeds and my

understanding is that this particular formula is much easier for CF

patients to digest. We found that we needed Emma's night feeds to end a

few hours before she ate in the morning or it really affected how she ate

during the day. As a result, we kept slowly increasing the rate at which

she was given the formula until a point where she seemed to have real

problems keeping it down and then we put it slightly lower than that.

Her night feeds now end around 3 in the morning so we have a huge window

between when they end and 8am when she eats her first meal of the day.

We figure her stomach can use the rest. At one point, we were even

adding in either Scandical or Duocal (a calorie supplement) to the night

feeds. We don't do this now because our daughters weight is really good

now. She is only on night feeds to get fluids at this point (she hates

to drink). I don't have any insight on when she should start gaining

weight but she sounds pretty tiny. I wouldn't be patient if it was my

child. I would push for something to change.

Good Luck to all of you,

Law - mom to Emma 2 1/2 years w/cf, acid reflux and a g-tube and

Isabelle 4 years wo/cf

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[Guest guest]

Louise,

The lump of skin that is sticking out from the tube site is called a

granuloma. Basically, it's tender scar tissue (granulation) which should

be removed. We had major problems with this with Emma. We had to take

her in to have it removed several times. They used silver nitrate to

cauterize it. The last time, it was real bad as any time any pressure

was put on it, it would start to openly bleed (seeping through her shirt

and onto her pants). Finally, our GI nurse had us use a steriod cream

primarily used by psioriosis patients and we applied it directly to the

granuloma only and this made it go away and it hasn't come back since.

If this hadn't worked, they were going to have us use the silver nitrate

at home ourselves which I really didn't want to do. Anyway, it

definately sounds like a granuloma. They need to call her GI doctor or

whoever was responsible for having the tube put in and let them know she

has a granuloma that needs removed.

Is she on any enzymes when she has her night feeds? If she isn't, she

definately should be. The one they usually use is viocase which comes in

power form. You mix it with a little water and put it directly down her

tube using a syringe. If she is on enzymes at night, how often do you

give them. We initially had Emma on the enzymes at the beginning and end

of the feed and then they changed it (I don't remember exactly why at

this point, it was over a year ago) so she gets them in the middle of the

night as well. What type of formula are you giving her? Our daughter is

on Peptamen Jr. This is especially developed for night feeds and my

understanding is that this particular formula is much easier for CF

patients to digest. We found that we needed Emma's night feeds to end a

few hours before she ate in the morning or it really affected how she ate

during the day. As a result, we kept slowly increasing the rate at which

she was given the formula until a point where she seemed to have real

problems keeping it down and then we put it slightly lower than that.

Her night feeds now end around 3 in the morning so we have a huge window

between when they end and 8am when she eats her first meal of the day.

We figure her stomach can use the rest. At one point, we were even

adding in either Scandical or Duocal (a calorie supplement) to the night

feeds. We don't do this now because our daughters weight is really good

now. She is only on night feeds to get fluids at this point (she hates

to drink). I don't have any insight on when she should start gaining

weight but she sounds pretty tiny. I wouldn't be patient if it was my

child. I would push for something to change.

Good Luck to all of you,

Law - mom to Emma 2 1/2 years w/cf, acid reflux and a g-tube and

Isabelle 4 years wo/cf

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[Guest guest]

Louise,

The lump of skin that is sticking out from the tube site is called a

granuloma. Basically, it's tender scar tissue (granulation) which should

be removed. We had major problems with this with Emma. We had to take

her in to have it removed several times. They used silver nitrate to

cauterize it. The last time, it was real bad as any time any pressure

was put on it, it would start to openly bleed (seeping through her shirt

and onto her pants). Finally, our GI nurse had us use a steriod cream

primarily used by psioriosis patients and we applied it directly to the

granuloma only and this made it go away and it hasn't come back since.

If this hadn't worked, they were going to have us use the silver nitrate

at home ourselves which I really didn't want to do. Anyway, it

definately sounds like a granuloma. They need to call her GI doctor or

whoever was responsible for having the tube put in and let them know she

has a granuloma that needs removed.

Is she on any enzymes when she has her night feeds? If she isn't, she

definately should be. The one they usually use is viocase which comes in

power form. You mix it with a little water and put it directly down her

tube using a syringe. If she is on enzymes at night, how often do you

give them. We initially had Emma on the enzymes at the beginning and end

of the feed and then they changed it (I don't remember exactly why at

this point, it was over a year ago) so she gets them in the middle of the

night as well. What type of formula are you giving her? Our daughter is

on Peptamen Jr. This is especially developed for night feeds and my

understanding is that this particular formula is much easier for CF

patients to digest. We found that we needed Emma's night feeds to end a

few hours before she ate in the morning or it really affected how she ate

during the day. As a result, we kept slowly increasing the rate at which

she was given the formula until a point where she seemed to have real

problems keeping it down and then we put it slightly lower than that.

Her night feeds now end around 3 in the morning so we have a huge window

between when they end and 8am when she eats her first meal of the day.

We figure her stomach can use the rest. At one point, we were even

adding in either Scandical or Duocal (a calorie supplement) to the night

feeds. We don't do this now because our daughters weight is really good

now. She is only on night feeds to get fluids at this point (she hates

to drink). I don't have any insight on when she should start gaining

weight but she sounds pretty tiny. I wouldn't be patient if it was my

child. I would push for something to change.

Good Luck to all of you,

Law - mom to Emma 2 1/2 years w/cf, acid reflux and a g-tube and

Isabelle 4 years wo/cf

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[Guest guest]

We found also that if Rebekah had her feeds run a little faster and end

around 3 am we gave her enzymes and a breathing treatment and at 8 to 9 am

she would eat .When she wouldn't eat we bolused a Scandishake 600 calories

and she lived a while on 2 a day plus her 6 small eating times a day.Ways of

adding calories Carnation instant drinks,using half n half creamer to milk

for extra calories,using powdered milk to whole milk ,Scandical is a powder

additive to add calories,Polycose adds extra calories it is a powder

also.Icecream with Cream and whole milk for shakes,chocolate powder for

calories.Can you tell we have been there done that?LOL I hope some of this

helps.BeckyB--Mommy to 8 kiddos-2w/cf--and Nana to 2

[Guest guest]

We found also that if Rebekah had her feeds run a little faster and end

around 3 am we gave her enzymes and a breathing treatment and at 8 to 9 am

she would eat .When she wouldn't eat we bolused a Scandishake 600 calories

and she lived a while on 2 a day plus her 6 small eating times a day.Ways of

adding calories Carnation instant drinks,using half n half creamer to milk

for extra calories,using powdered milk to whole milk ,Scandical is a powder

additive to add calories,Polycose adds extra calories it is a powder

also.Icecream with Cream and whole milk for shakes,chocolate powder for

calories.Can you tell we have been there done that?LOL I hope some of this

helps.BeckyB--Mommy to 8 kiddos-2w/cf--and Nana to 2

[Guest guest]

We found also that if Rebekah had her feeds run a little faster and end

around 3 am we gave her enzymes and a breathing treatment and at 8 to 9 am

she would eat .When she wouldn't eat we bolused a Scandishake 600 calories

and she lived a while on 2 a day plus her 6 small eating times a day.Ways of

adding calories Carnation instant drinks,using half n half creamer to milk

for extra calories,using powdered milk to whole milk ,Scandical is a powder

additive to add calories,Polycose adds extra calories it is a powder

also.Icecream with Cream and whole milk for shakes,chocolate powder for

calories.Can you tell we have been there done that?LOL I hope some of this

helps.BeckyB--Mommy to 8 kiddos-2w/cf--and Nana to 2

[Guest guest]

My son also has a g-tube and he doesn't eat at all during the day

(he is 21 months). He is so full from the tube feedings that he

doesn't have any appetite. He doesn't eat for many reasons (not

hungry, was forced to eat as an infant, hated the enzymes before he

could eat, was on a respirator, has bad reflux, etc). Anyway, he is

on Peptamen Jr and we add rice cereal to it. No more than 1/2 tsp

per oz of formula or it clogs the tube.

We also use viokase enzymes which work great. We can give him

enzymes while he sleeps. We hook him up to the tube at 8pm and give

him enzymes and then before we go to bed, we give him some more.

When he wakes up, we give him some more. This seems to handle the

malabsoorption. The more the enzymes are spread out, the better.

Be sure she drinks plenty of water during the day (if she refuses,

you can put it right into the tube).

A trick we use to keep redness down around the stoma site--mix

vaseline and zinc oxide together (1/2 and 1/2). Use a q-tip to put

it around the site at bedtime after a bath. This moisturizes the

area and prevents moisture from damaging the skin.

That's all the advice I have! I hope it helps.

[Guest guest]

My son also has a g-tube and he doesn't eat at all during the day

(he is 21 months). He is so full from the tube feedings that he

doesn't have any appetite. He doesn't eat for many reasons (not

hungry, was forced to eat as an infant, hated the enzymes before he

could eat, was on a respirator, has bad reflux, etc). Anyway, he is

on Peptamen Jr and we add rice cereal to it. No more than 1/2 tsp

per oz of formula or it clogs the tube.

We also use viokase enzymes which work great. We can give him

enzymes while he sleeps. We hook him up to the tube at 8pm and give

him enzymes and then before we go to bed, we give him some more.

When he wakes up, we give him some more. This seems to handle the

malabsoorption. The more the enzymes are spread out, the better.

Be sure she drinks plenty of water during the day (if she refuses,

you can put it right into the tube).

A trick we use to keep redness down around the stoma site--mix

vaseline and zinc oxide together (1/2 and 1/2). Use a q-tip to put

it around the site at bedtime after a bath. This moisturizes the

area and prevents moisture from damaging the skin.

That's all the advice I have! I hope it helps.

[Guest guest]

My son also has a g-tube and he doesn't eat at all during the day

(he is 21 months). He is so full from the tube feedings that he

doesn't have any appetite. He doesn't eat for many reasons (not

hungry, was forced to eat as an infant, hated the enzymes before he

could eat, was on a respirator, has bad reflux, etc). Anyway, he is

on Peptamen Jr and we add rice cereal to it. No more than 1/2 tsp

per oz of formula or it clogs the tube.

We also use viokase enzymes which work great. We can give him

enzymes while he sleeps. We hook him up to the tube at 8pm and give

him enzymes and then before we go to bed, we give him some more.

When he wakes up, we give him some more. This seems to handle the

malabsoorption. The more the enzymes are spread out, the better.

Be sure she drinks plenty of water during the day (if she refuses,

you can put it right into the tube).

A trick we use to keep redness down around the stoma site--mix

vaseline and zinc oxide together (1/2 and 1/2). Use a q-tip to put

it around the site at bedtime after a bath. This moisturizes the

area and prevents moisture from damaging the skin.

That's all the advice I have! I hope it helps.

[Guest guest]

Our 5 yo with CF, and for that matter, our almost 7 (end of the

month) yr old with CF don't weigh alot more than that and don

t have feeding tubes. Interesting how different docs approach things

differently.

take care,

Jen

mommy of 7, 3 with CF

>

>

> Our nearly 6 year old granddaughter, had a feeding tube

placed the

> day before Thanksgiving of '02. She weighed 33 pounds at the

time.

> eats little to nothing during the day; a couple of bites of toast

some

> juice, a few bites of grilled cheese, a cup of milk; you get the

> picture. Throughout the night she receives 500 calories of formula

via the

> tube. Now, 42 days later she weighs between 33 and 34 and a half

> pounds. I am worried sick. It seems, even calculating the feeds

along

> with her meals and snacks, she consumes less cals. and eats less

now than

> she did before the tube placement. The doctor tells my daughter-in-

law,

> that people react differently and sometimes it just takes

> time. She looks rather gaunt to me. And it scares me. Also, at

the site

> of incision, she has a lump of skin ? that sticks out, is red and

seeps

> gooey stuff that crusts dry to her skin. She is quite

uncomfortable when

> we try to clean the area with warm soaks. She other-wise offers no

> complaints of pain. Her bowel movements are " normal' " for .

She

> refuses much of her food or drink and states she is not hungry most

of the

> time. Can anyone offer some insight or thoughts about when she

should

> start gaining, should we push for more feedings to make up for the

loss

> of cals., is 55 cals. enough for night feeds, do you think she

needs day

> feeds, do they do day feeds, do I need to be more patient? She is

so

> tiny. Help!

>

> Louise Gram to Princess nearly 6 WCF, and her Footman,

Stevie 3 WOCF

>

>