Enzymes

[Guest guest]

I know others do not and will not agree, but our doc said that it is

ok to not give with juice BUT that if we do that they will not get the

nutrients from the juice...so, he said her prefers we give it with

juice, etc....

Jen

Mommy of 7, 3 with CF

> It is my understanding that the enzymes are for digesting fats- It

is also

> my understanding that each dose lasts 1 1/2 hr. or 2 hrs. Do

pretzels have

> fats? Juice?

> What is your opionion, (sp)?

>

>

> Glenda- gmom to Jasmine 3yr red haired girl

>

>

>

> [Non-text portions of this message have been rem

[Guest guest]

In a message dated 8/17/2003 3:24:21 AM Central Daylight Time,

Mcesana@... writes:

> If one reads the label, there usually more units in each capsule for pro

> tease (for digesting protein) than there are for lipase (for digesting fat)

> and amylase (for digesting carbohydrates). That is in part because so

> few proteins arrive without carrying fat with them. I was told to take my

> enzymes at the end of the meal, which works at least for me; cf " kid "

> does the same.

> n Rojas, wcf, mom of 3 very adult adults, youngest wcf, too

>

>

I was told if they don't take it at the beginning of the meal and don't

remember to take it until they are done then not to bother because the enzymes

need

to be there to start the digestion. Deb A

[Guest guest]

Hi,

I just wanted to clarify that I give enzymes with meals and most snacks.

I try NOT to give her low fat snacks since she has a weight gain problem we are

always trying to add calories wherever we can. If she has pretzels (low fat)

then she usually has milk and/or something with fat like cheese or ranch

dressing to dip it in, so she needs the enzymes then. I guess we all do it

differently because our kids are effected differently. I know that when I skip

enzymes for a snack, even when it is low fat, has more " digestive issues "

(you know what I mean) But if I give her a few enzymes with a low fat snack, no

problem. I do not give enzymes for things like most fruits or veggies by

themselves, or juice alone. For , it is more effective to get enzymes in

the beginning of a meal but when we do the g-tube she gets them in the beginning

and half way though the feed. I really think that you have to experiment and

see what is right for each kid.

Re: ENZYMES

I give Tyler his enzymes at the beginning of his meal, or shortly after. I

do not give him enzymes with juice, and rarely give him enzymes with snacks.

Usually his snacks are a small cup of goldfish, crackers etc....things that

don't have that much fat in them. Our doc told us that he does not need

enzymes

when eating something low fat such as an apple. I was also told that I may

need to adjust his enzymes depending on what he ate. The more fatty or

greasy,

the more enzymes he would need.

Giving too many enzymes will cause other problems, so be careful if you are

giving enzymes with everything that goes in the child's mouth. I know first

hand that too many enzymes caused repeated blockages in Tyler and can also

have

an effect on the liver. When Tyler was 2 and had many obstructions, they

found his liver enzymes to be highly elevated, and they told me that it could

have

been caused from too many enzymes. So I really be careful as to how many

enzymes I give.

Dawn

mom to Tyler 5 w CF

[Guest guest]

Angle

Eilish was dx at 3 weeks. She started enzymes a few days later. They

took stool samples and they also go by the gene(s).

(Australia)

Enzymes

Just a question for anyone....

If a child is diagnosed with cf before, at, or shortly after birth, do

they automatically prescribe enzymes without waiting to see if the child

really needs them? JC was diagnosed at 4 months. While he was thin, he

was on the growth charts. The clinic has monitored his weight

carefully, but because he continues to gain and has " normal " stools, he

seems to be pancreatic sufficient. I realize that with most cf kids it

is painfully obvious that they need enzymes, I was just wondering if its

not obvious do most clinics wait and see or do they give enzymes

automatically. Just curious.

Angie (Ma to JC, 3yo, wcf)

RE: New to the group

Hi Kristi,

As almost everyone has said already, it is incredibly fortunate that

you

found out before he is born. Kate was diagnosed at two months, and I

was a wreck for that time period. Things were MUCH better after

diagnosis! She grew fat and rosy and happy (finally)! I've mulled it

over a little and here's some stuff I wish I had known at the

beginning.

3) Enzymes will most likely be prescribed for your baby. I fed these

to

Kate in applesauce, but other acidic foods work too. Anybody have

favorites other than applesauce?

[Guest guest]

My son was 11 weeks premature due to CF (meconium ileus that required

surgery). He didn't eat until he was 3 weeks old (technically not

due for another 8 weeks though). He was given enzymes with his first

feeding. Rather hard to feed a premie creon capsules when they

hardly know how to swallow! We would dip our pinky in applesauce and

then roll our finger in the enzyme pellets. Then have a syringe of

water, formula or breastmilk and as we stuck our finger in his mouth,

we rinsed the enzymes down with the syringe (had about 3 cc of

liquid). I STRONGLY encourage you to breastfeed for as long as

humanly possible. Even if you have to pump it. It kept my son

perfectly healthy for a year--no colds or anything. that's my 2

cents. Good luck to you and feel free to answer any questions you

may have to this group. We have a lot of experience to share.

mom to Ashton 28 months wcf http://www.babyfergie.com

> Angie My son is not even born yet. Due in Nov. My doctor has told

me know

> matter what signs or not I will start him on enzymes. I don't know

whats

> right or not as I'm learning and no other family member has cf.

Right now

> I'm trusting myself and my doctor. It's all I can do.

> Kristi

>

>

> >From: " Angie & Partin " <a & jpartin@n...>

> >Reply-To: cfparents

> >To: <cfparents >

> >Subject: Enzymes

> >Date: Wed, 20 Aug 2003 22:40:35 -0400

> >

> >Just a question for anyone....

> >

> >If a child is diagnosed with cf before, at, or shortly after

birth, do they

> >automatically prescribe enzymes without waiting to see if the

child really

> >needs them? JC was diagnosed at 4 months. While he was thin, he

was on

> >the growth charts. The clinic has monitored his weight carefully,

but

> >because he continues to gain and has " normal " stools, he seems to

be

> >pancreatic sufficient. I realize that with most cf kids it is

painfully

> >obvious that they need enzymes, I was just wondering if its not

obvious do

> >most clinics wait and see or do they give enzymes automatically.

Just

> >curious.

> >

> >Angie (Ma to JC, 3yo, wcf)

> >

> >

> > RE: New to the group

> >

> >

> > Hi Kristi,

> >

> > As almost everyone has said already, it is incredibly fortunate

that you

> > found out before he is born. Kate was diagnosed at two months,

and I

> > was a wreck for that time period. Things were MUCH better after

> > diagnosis! She grew fat and rosy and happy (finally)! I've

mulled it

> > over a little and here's some stuff I wish I had known at the

beginning.

> >

> >

> > 3) Enzymes will most likely be prescribed for your baby. I fed

these to

> > Kate in applesauce, but other acidic foods work too. Anybody

have

> > favorites other than applesauce?

> >

> >

> >

> >

> >

> >

[Guest guest]

I just wanted to say a word about Creon enzymes which I take. When

they were first prescribed for me last year, when I was first

diagnosed with CP, I really thought the actual disease had taken a

turn for the worse. I had terrible lower-abdominal cramps. They were

really bad. The Creon did help with diarrhoea and steatorrhoea

though, even at that time. After a few weeks, mercifully the cramps

stopped. The Creon is excellent at controlling the malabsorption.

It's great not to have to worry about steatorrhoea etc.

Of course,people react differently to different enzyme preparations

and you have to find the one that is appropriate for you. I'm just

saying that, judging from my personal experience, it's possible for

a particular brand to seem to make things worse at the beginning but

then to settle down. I have read of others with similar experiences.

Obviously, some patients may not need supplementary enzymes at all.

I presume it depends, to some extent,on how effective your pancreas

is in producing its own enzymes, ie. how much malabsorption you

have. I have advanced CP with very little pancreas activity left, if

any.

My pancreatologist, in the information booklets he has written to be

given to patients here, says that enzymes, as well as helping to

control malabsorption, " may " also help with pain. I can't be sure

yet, in my own case, because it has been too short a time since I

was prescribed the Creon, but it is true that I have had a pretty

good few months painwise since taking them, after the first few

difficult weeks that is, especially since I was put on to high

doses. I have not been completely painfree by any means, and have

had some rough days, but I haven't thought seriously about having to

give up work, which I definitely WAS doing before. This COULD be

just a chance good spell, but, at the moment anyway, the Creon seems

to help both with the lower abdominal pain, gas, diarrhoea etc. that

goes with malabsorption but also, for some reason I don't

understand, with the horrible upper-abdominal/back pain which is the

pancreas itself when inflamed. How I HATE that pain! It has been my

enemy for 53 years now! (I was only 5 when it first had me curled up

in a ball for a week.)

I know everyone's case is different but I thought it might be worth

sharing my experience.

Good wishes to everyone,

Fliss

[Guest guest]

is taking a generic for Viokase called Panokase. He was first told to take

2 with every meal and snack, then 3 and 4. Sounded as if they weren't sure what

he should take. Hope you got my other message about not being able to open any

of the attachments you sent. Frustrating cause I know it took you some time and

we are extremely interested in seeing what is there. Also know that you have

good and bad days like us so when you can get back to us let us know. We are

ones that certainly understand. Also very interested in the antioxidants and

whether we need to just grab one bottle with all of what you listed in it or

have to seek out each on it's on. Thank you so much for your help. I can't

express enough our appreciation and also know you have many others to get back

to. Take care.

Jodee

Re: Enzymes

wrote:

> We just looked up the side effects of the enzymes needs to take with

every meal and low and behold one of them is stomach pain or stomach

cramping. Good grief! Is there no getting away from the pain from

something that is supposed to help?

,

Sometimes the non-enteric coated pancreatic enzymes will cause cramping

for the first several days. Usually the body gets adjusted to them and the

cramping stops. It also depends upon the brand. Some enzymes that don't

have an enteric coating, but a matte finish, have to be taken AFTER the

patient has taken an antiacid about 15 minutes beforehand. This isn't

necessary with the enteric coated types like Ultrase or Lipram.

Sometimes doctor's don't even know this, and mistakenly prescribe the

enzyme without an antiacid to take first. And it's also known that some

enzymes work better for some people than others. I tried four different

brands, two with the matte finish, and two enteric coated brands, before I

found the one that works best for me. I take Ultrase MT20's, 5 with each

meal and snack, and experience no cramping or discomfort. What kind are

you taking?

With hope and prayers,

Heidi

Heidi H. Griffeth

South Carolina

SC & SE Regional Rep.

PAI, Intl.

Note: All comments or advice are personal opinion only, and

should not be substituted for consultation with a medical

professional.