Eddie's weight and enzyme question

[Guest guest]

Thank you

I just worry about Eddie's weight so much. The doctor once mentioned

possibility of tube feeding at night and I am trying so hard to avoid

that. Eddie has a lot of digestive problems and absolutely no sign

ever of any lung stuff (Mucous, coughing, ect.) Greg my 6 year old on

the other hand is total opposite. Greg was diagnosed at 3 months old

with CF because of mucous. Then we tested Eddie (2 years old then)

and found out he had it also.

All I can do is keep fooling around with these enzymes and doses.

Right now Eddie takes 2 MT 20 capsules at beginning of meal and 2 MT

20 capsules in middle of meal. He weighs 48.5 pounds.

Can anyone tell me what brand and how many enzymes their children

take?

Thank you, mom of 2 w/cf

[Guest guest]

> Can anyone tell me what brand and how many enzymes their children

> take?

>

> Thank you, mom of 2 w/cf

,

Wyatt takes Pancrecarb MS-8

Christy

[Guest guest]

Oops and he takes 6 capsules w/ meals and 3-4 w/ snacks. CHristy

>

> > Can anyone tell me what brand and how many enzymes their children

> > take?

> >

> > Thank you, mom of 2 w/cf

>

> ,

> Wyatt takes Pancrecarb MS-8

> Christy

[Guest guest]

My granddaughter takes Pancrease MT-16 & has all her life (19 yrs.)

only changed the ##

MT's . She has done fine. She picks what foods she takes with tho .

LOVE & HUGS< GRANDMOMBEV

Re: Eddie's weight and enzyme question

> Can anyone tell me what brand and how many enzymes their children

> take?

>

> Thank you, mom of 2 w/cf

,

Wyatt takes Pancrecarb MS-8

Christy

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

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]

,

Both my boys, 12 & 11, take Pancreacarb MS-8. They take 4 with

meals & 3 with snacks. They both weigh around 70 lbs.

Vondie

[Guest guest]

NATHAN TAKES ULTRASE 5 WITH MEALS, 3 SNACKS. HE IS 21 MONTHS 29 LB 34 INCHES .

AMY

Re: Eddie's weight and enzyme question

> Can anyone tell me what brand and how many enzymes their children

> take?

>

> Thank you, mom of 2 w/cf

,

Wyatt takes Pancrecarb MS-8

Christy

[Guest guest]

NATHAN TAKES ULTRASE 5 WITH MEALS, 3 SNACKS. HE IS 21 MONTHS 29 LB 34 INCHES .

AMY

Re: Eddie's weight and enzyme question

> Can anyone tell me what brand and how many enzymes their children

> take?

>

> Thank you, mom of 2 w/cf

,

Wyatt takes Pancrecarb MS-8

Christy

[Guest guest]

Levi is almost five years old and takes 4 Pancrease MT4 with meals

and snacks (5 if it's really greasy food.) He weighed 43 pounds at

his last clinic visit (December), but has put on some weight since

then due to a three week course of prednisone. He has a good

appetite anyway, though, and will try any food put in front of him.

On the other hand, he has recently had more respiratory involvement,

coughing, hyperinflation of his lungs in the x-rays. It use to be

rare that he would cough. It's been months since a day has gone by

that he hasn't coughed and I am sick over it.

Sorry to whine, but this list is really the only place where I can

whine about it and have someone have a clue about what I'm feeling.

I totally understand that you want to avoid tube feeding. I get a

little panic-y every time we have to add some new unpleasant aspect

to my son's " maintenance " (aerosols, vest, enzymes, ADEKs, and lately

antibiotics, steroids, etc.) I have heard people say, though, that

tube feeding can do wonders for weight gain.

His enzyme dosage seems high to me, but the nutritionist at our

clinic often remarks that my son is on a very low dose for his

weight/ age, so maybe he is not a good candidate to compare with.

Have you tried any other supplements for the weight gain? There are

things that can be added to food and drinks to add calories. I have

no experience with these, but others on this list do.

Also, there is a supplement called Mannacleanse that helps some

people with cf. It's sold by Mannatech, which is a multi-level

marketing company. We got some for Levi when he was having some mild

blockage problems (I say mild because it didn't require surgery, but

it didn't seem mild while holding a screaming kid who couldn't " go " .)

Mannacleanse has some enzymes in it, but they are plant-derived and

not as strong as prescription enzymes. When Levi took the

Mannacleanse, his need for the Pancrease went down and his blockage

problems disappeared. I don't know if we were just trading one kind

of enzyme for another, or something else was going on. The

Mannacleanse pills are big, though, and are not particularly tasty

when crushed up, so if your child doesn't swallow pills well it might

not be an option for you.

If you are really reluctant to try tube feeds, you might talk to the

doctor about different types of supplements that could be

beneficial. Mannatech has a website with product info on it

http://www.mannatech.com They like to recruit people for their MLM

business, but you only save a couple of dollars per product when you

join (and pay the fee to sign up), not such a great deal unless you

know you're going to buy the supplements often or in large quantities.

Just a thought.

There are probably other supplements around that are similar to

Mannacleanse in ingredients and results. I haven't found any, though

(if you find some, let me know!)

I hope you find something that works for Eddie.

~

mommy of 3, 1 with cf

> All I can do is keep fooling around with these enzymes and doses.

> Right now Eddie takes 2 MT 20 capsules at beginning of meal and 2

MT

> 20 capsules in middle of meal. He weighs 48.5 pounds.

>

> Can anyone tell me what brand and how many enzymes their children

> take?

>

> Thank you, mom of 2 w/cf

[Guest guest]

Levi is almost five years old and takes 4 Pancrease MT4 with meals

and snacks (5 if it's really greasy food.) He weighed 43 pounds at

his last clinic visit (December), but has put on some weight since

then due to a three week course of prednisone. He has a good

appetite anyway, though, and will try any food put in front of him.

On the other hand, he has recently had more respiratory involvement,

coughing, hyperinflation of his lungs in the x-rays. It use to be

rare that he would cough. It's been months since a day has gone by

that he hasn't coughed and I am sick over it.

Sorry to whine, but this list is really the only place where I can

whine about it and have someone have a clue about what I'm feeling.

I totally understand that you want to avoid tube feeding. I get a

little panic-y every time we have to add some new unpleasant aspect

to my son's " maintenance " (aerosols, vest, enzymes, ADEKs, and lately

antibiotics, steroids, etc.) I have heard people say, though, that

tube feeding can do wonders for weight gain.

His enzyme dosage seems high to me, but the nutritionist at our

clinic often remarks that my son is on a very low dose for his

weight/ age, so maybe he is not a good candidate to compare with.

Have you tried any other supplements for the weight gain? There are

things that can be added to food and drinks to add calories. I have

no experience with these, but others on this list do.

Also, there is a supplement called Mannacleanse that helps some

people with cf. It's sold by Mannatech, which is a multi-level

marketing company. We got some for Levi when he was having some mild

blockage problems (I say mild because it didn't require surgery, but

it didn't seem mild while holding a screaming kid who couldn't " go " .)

Mannacleanse has some enzymes in it, but they are plant-derived and

not as strong as prescription enzymes. When Levi took the

Mannacleanse, his need for the Pancrease went down and his blockage

problems disappeared. I don't know if we were just trading one kind

of enzyme for another, or something else was going on. The

Mannacleanse pills are big, though, and are not particularly tasty

when crushed up, so if your child doesn't swallow pills well it might

not be an option for you.

If you are really reluctant to try tube feeds, you might talk to the

doctor about different types of supplements that could be

beneficial. Mannatech has a website with product info on it

http://www.mannatech.com They like to recruit people for their MLM

business, but you only save a couple of dollars per product when you

join (and pay the fee to sign up), not such a great deal unless you

know you're going to buy the supplements often or in large quantities.

Just a thought.

There are probably other supplements around that are similar to

Mannacleanse in ingredients and results. I haven't found any, though

(if you find some, let me know!)

I hope you find something that works for Eddie.

~

mommy of 3, 1 with cf

> All I can do is keep fooling around with these enzymes and doses.

> Right now Eddie takes 2 MT 20 capsules at beginning of meal and 2

MT

> 20 capsules in middle of meal. He weighs 48.5 pounds.

>

> Can anyone tell me what brand and how many enzymes their children

> take?

>

> Thank you, mom of 2 w/cf

[Guest guest]

You are not alone in believing it this .Many folks have fou nd it to be Very

useful & successful for them or theirs......best wishes on each success you

can get for him

Love & hugs,

grandmomBEV

Re: Eddie's weight and enzyme question

Levi is almost five years old and takes 4 Pancrease MT4 with meals

and snacks (5 if it's really greasy food.) He weighed 43 pounds at

his last clinic visit (December), but has put on some weight since

then due to a three week course of prednisone. He has a good

appetite anyway, though, and will try any food put in front of him.

On the other hand, he has recently had more respiratory involvement,

coughing, hyperinflation of his lungs in the x-rays. It use to be

rare that he would cough. It's been months since a day has gone by

that he hasn't coughed and I am sick over it.

Sorry to whine, but this list is really the only place where I can

whine about it and have someone have a clue about what I'm feeling.

I totally understand that you want to avoid tube feeding. I get a

little panic-y every time we have to add some new unpleasant aspect

to my son's " maintenance " (aerosols, vest, enzymes, ADEKs, and lately

antibiotics, steroids, etc.) I have heard people say, though, that

tube feeding can do wonders for weight gain.

His enzyme dosage seems high to me, but the nutritionist at our

clinic often remarks that my son is on a very low dose for his

weight/ age, so maybe he is not a good candidate to compare with.

Have you tried any other supplements for the weight gain? There are

things that can be added to food and drinks to add calories. I have

no experience with these, but others on this list do.

Also, there is a supplement called Mannacleanse that helps some

people with cf. It's sold by Mannatech, which is a multi-level

marketing company. We got some for Levi when he was having some mild

blockage problems (I say mild because it didn't require surgery, but

it didn't seem mild while holding a screaming kid who couldn't " go " .)

Mannacleanse has some enzymes in it, but they are plant-derived and

not as strong as prescription enzymes. When Levi took the

Mannacleanse, his need for the Pancrease went down and his blockage

problems disappeared. I don't know if we were just trading one kind

of enzyme for another, or something else was going on. The

Mannacleanse pills are big, though, and are not particularly tasty

when crushed up, so if your child doesn't swallow pills well it might

not be an option for you.

If you are really reluctant to try tube feeds, you might talk to the

doctor about different types of supplements that could be

beneficial. Mannatech has a website with product info on it

http://www.mannatech.com They like to recruit people for their MLM

business, but you only save a couple of dollars per product when you

join (and pay the fee to sign up), not such a great deal unless you

know you're going to buy the supplements often or in large quantities.

Just a thought.

There are probably other supplements around that are similar to

Mannacleanse in ingredients and results. I haven't found any, though

(if you find some, let me know!)

I hope you find something that works for Eddie.

~

mommy of 3, 1 with cf

> All I can do is keep fooling around with these enzymes and doses.

> Right now Eddie takes 2 MT 20 capsules at beginning of meal and 2

MT

> 20 capsules in middle of meal. He weighs 48.5 pounds.

>

> Can anyone tell me what brand and how many enzymes their children

> take?

>

> Thank you, mom of 2 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]

,

Eilish takes about 20 pancrease a day which is about 5000 lipase.

Apparently that isn't a high dose as she can go up to 10,000. But on

the other hand she has hardly ever had stomached problems etc.

(Australia)

Eddie's weight and enzyme question

Thank you

I just worry about Eddie's weight so much. The doctor once mentioned

possibility of tube feeding at night and I am trying so hard to avoid

that. Eddie has a lot of digestive problems and absolutely no sign

ever of any lung stuff (Mucous, coughing, ect.) Greg my 6 year old on

the other hand is total opposite. Greg was diagnosed at 3 months old

with CF because of mucous. Then we tested Eddie (2 years old then)

and found out he had it also.

All I can do is keep fooling around with these enzymes and doses.

Right now Eddie takes 2 MT 20 capsules at beginning of meal and 2 MT

20 capsules in middle of meal. He weighs 48.5 pounds.

Can anyone tell me what brand and how many enzymes their children

take?

Thank you, mom of 2 w/cf