Re: and and

[Guest guest]

Hi everyone, this is quite interesting actually. Shantell and I just

discussed yesterday that she has stopped using her enzymes. We switched

about 3 months ago to Pancrecarb from the Pancrease MT-16's. Now that she

is completely on a no fat diet, and keeps her weight a steady 110 at 5'4 " , she

says they slow her stomach down to almost an obstruction when she takes even

one. I am thinking of lowering her dose to Pancrecarb 4's, maybe just one

at a time. She's kind of outgrown her need for tons of enzymes now.

She is 19yr, 71% FEV1, double D508, and quite healthy at the moment. I

never considered her a mild case because of a lot of involvement in her sinuses,

digestive and some lung, just well managed. Do you think they can really

outgrow this stuff??? Wishful thinking, but hey, it's nice to think about

it!

, mom of Shantell 19yr wcf, 22 ncf, Robby 18 ncf, Tony 14 ncf,

who had so many children home for the summer she doesn't know what to do!

and

, and ,

Just wanted to add that our na- age 7.5 with CF has

df508 and

unknown too. She was dxed at 18 mo. and has been on enzymes

and

treatments/therapy since...just thought I would share that:)

-mom of 4, one with CF, and #5 due in July with poss. CF

PLEASE do not post religious emails to the list.

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

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

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

[Guest guest]

Hi G,

is definately not on a no fat diet, that must be Shantell's thing

because it doesn't sound like what a cf doc would prescribe! I guess

whatever works for you. It took a long time for us to get to taking 1-2

regular ultrase. I know you can't outgrow cf but maybe you can go on a

lower dose of enzymes, or stop taking some other pill. OF course ask your

doc before changing anything. I have been thinking could probably go

off her celexa (anti-deppresant) but I always forget to ask. Sshe is doing

better now, and might be fine without them. That is just an example. I

think sinuses can get better, but the thing is they keep getting clogged up

again, no matter what we have tried to do to keep them open.

Anyway, I'm glad to hear Shantell is doing pretty well! We can try and keep

it that way!

love,

M

Mom of Nick age 19 nocf and 17, wcf

[Guest guest]

,

What do you mean out grow enzymes? Deb

[Guest guest]

FG,

I have a question for you. My oldest daughter is 9 she is going in this month

for her second sinus surgery to remove polyps. You said you daughter has

problems with her sinuses. Has she had polyps removed? and if she has how

many times has she had to have this done? It has been two years since her

last surgery and her doctor told us each time she has surgery to remove the

polyps the less will come back. I just wonder if you felt this was true. Also

what is this water pic? My daughter after having the last surgery hated

irrigating her nose. Somehow she would get water back behind her ear and she

would cry to the point were it would bother her all day and at school too. So

we had to quit. I have been looking for an easier alternative for her. Any

suggestions on this would be appreciated. Thanks Deb

[Guest guest]

Well, this is my theory, and it may be correct or it may be not. Like

every other kid, during the growing years, kids need more to build bones and

normal growth. When you reach the height, weight and nutrition that you

are at, your body naturally doesn't need as much. Shantell is 19, she's

not going to grow any taller, she's very average for height and

weight. Now, keep in mind that she never had any problems, she's always

been on the 90 percentile (thanks probably to enzymes and lots and lots of

food!). She is on a very low fat diet, and most of your CF doctors will

tell you that is a big no no. In Shantell's case, the fat was making her

very sick, her body just can't handle cheese, milk, grease or foods high in

fat. Believe me, I tried because of the the CF doctors told me we had

to. Instead, she eats the foods that don't make her feel bad, are easy to

digest and keep her nutrition up (grilled chicken breast with no skin,

cantelope, cheerios, yogurt no fat ect.). The enzymes are to break down

the fat, you don't need them when you eat no fat. If you eat an apple, you

don't need an enzyme. There are certain kinds of fat that you do need the

enzymes for. Because Shantell eats very little fat, because she isn't

growing anymore, then her need for enzymes has decreased. Remember that

adult CF is not cut and dry, that it is basically all experimental.

Growing up, we lived on a remote island in Alaska (Kodiak), so we didn't have

access to CF centers or doctors who knew a clue about CF, so everything we did

was experimental...trial and error. We got scolded by CF doctors when we

did go to see them. We are kind of the rebels out there. But hey,

Shantell is 19years old, been hospitalized a total of four times including

birth, the first being at age 16. She's 5'4 " , 110 pounds and absolutely

beautiful. You would never know she had CF. It hasn't been easy for

us, like I said she had a lot of involvement in her digestive tract, sinuses and

we work very hard to keep her lungs clear. She does have

pseudomonas. It's all about staying ahead of it. Sometimes, you just

can't, but we try like crazy! For years, the CF Center told us to use a

water pik to flush out her sinuses because she had pseudomonas in them.

Last year, she started seeing a doctor who suggested the water pik was

reinfecting her sinuses every time she used it. Now, she flushes with

disposable syringes of gentamycin flushes. No pseudomonas in her nose any

more. Now, why didn't I think of that years ago? I guess I figured

the CF doctors knew what they were talking about. CF is such an unknown

disease, and so individualized in each patient. How can you possibly know

each persons body with a disease that manifests itself so many different

ways. We are our children's best hope, and when they get old enough it

will be up to them. I know my daughter's body better than she does

herself. I can look at her eyes and know that she is coming down with

something. I can hear the difference in her cough whether it is asthma or

she's coming down with something. So much of this I learned by not being

accessible to doctors, by reading and opening my mind to other alternatives

rather than the traditional. OK, now I've rattled on and on...hope it

helps somehow. I'm not saying don't listen to your doctors, I'm saying

listen to everything!

FG, mom of Shantell 19yr wcf, 22ncf, Robby 18ncf, Tony

14ncf

Re: and

and

,

What do you mean out grow enzymes? Deb

PLEASE do not post religious emails to the list.

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

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]

Let's see if I can put this in Layman's terms...When an individual

habitually eats meals high in protein, the pancreas will secrete up to seven

times the normal amount of enzymes capable of breaking down protein; but

if his regular diet is high in starch, his pancreas will be up to ten-fold

higher in amylase secretion activity. The pancreas may adapt to produce

enzymes more consistent with one diet than another and the addition of the new

dietary materials leads to some maldigestion or malabsorption and such symptoms

as intestinal discomfort, flatulence or bloating. The breaking down

of food materials such as proteins, carbohydrate and fat into smaller absorbably

units is dependent upon the secretion in the digestive tract of a class of

proteins called enzymes, which are responsible for your ability to absorb

nutrition from your foods. There are specific digestive enzymes that break

down protein called proteases; carbohydrate, called amylases; and fat, called

lipases. The first secretion of a digestive enzyme when you eat, occurs as

you are chewing, when salivary amylase, an enzyme that can break down starch ,

is secreted in the mouth. You do not start to digest protein or fat in

your mouth, but that is where starch digestion is initiated. One of the

important reasons for thoroughly chewing your food before swallowing is to get a

good start with starch digestion. It's important to know that digestion of

your food begins before you even take the first bite. As you think about a

meal, you are setting the stage for its digestion when you actually eat

it. This is called the cephalic phase of digestion. If you are

thinking good thoughts and prepared for a fine meal, you are already secreting

digestive enzymes and hydrochloric acid in your stomach, which will promote

digestion of those nutrients once they arrive in the stomach. If you are

uptight and anxious before your meal, or are under severe stress, you may not be

able to secret enough acid or enzymes, and this negative chephalic phase can

result in maldigestion. This explains why a lot of people suffer from

digestive upsets and intestinal problems during times of extreme stress

(Rosemary!!??). I try to make the eating experience something like a

relaxing experience, something to look forward to. A happy time!

After the food has entered the mouth and started the digestive process, the body

moves into the gastric phase of digestion. In this phase, the food travels

to the stomach and specific hormones are released which start the enzyme

breakdown of foods. One of the most important hormones is gastrin, which

is released from the cells in the back of the stomach (released by dietrary

protien). Meals that are too low in protein do not stimulate the secretion

of gastrin, and this may result in poor digestion. Gastrin stimulates

cells within the stomach called the parietal cells to secrete hydrochloric acid,

which causes the food in the stomach, now starting to be digested, to become

acidic, which is essential for its full digestion. A protease enzyme

called pepsin is also released and begins the breakdown of protein. The

pancrease secretes enzymes in a matrix of sodium bicarbonate, which acts to

alkalize the very acidic food material. If there is not enough bicarbonate

release, the enzymes cannot work effectively in the duodenum to break down

foods. Then, the paradoxical situation of an underacid stomach producing

an overacid small intestine, which renders the enzymes less able to make

nutrients absorbable. Whewwwwww! In a nutshell, yes!!...the enzymes

help to absorb all the nutrients. The problem that Shantell was having

with her digestion was with the lack of bicarbonate, thus her stomach was too

acidic. With the new enzymes Pancrecarb (which has bicarbonate in them),

she is having less trouble with the acid environment. Therefore, she needs

less enzymes. She eats enough protein and carbohydrates so she is

absorbing enough. If she was having excessive gas, then it would indicate

maldigestion or malabsorption, requiring more enzymes. Obviously, I got a

lot of this information out of books...and I must confess, they were not CF

books. A very simple Digestive Enzymes booklet, one that I could

understand. There are a lot of things to read and know about a problem

that don't specifically have to be CF related. The more you learn about

the way things should be, the more you understand the problems of CF. If

anyone read to the bottom of this email, I'm sorry to carry on so, it is a hard

thing to explain and one that keeps us puzzled all the time.

FG, who went on WAY too long!, mom of Shantell 19yr wcf who hates to

read and leaves it all up to me!

Re: and and

Well, this is my theory, and it may be correct or it

may be not. Like

every other kid, during the growing years, kids need

more to build bones and

normal growth. When you reach the height, weight

and nutrition that you

are at, your body naturally doesn't need as much.

Shantell is 19, she's

not going to grow any taller, she's very average for

height and

weight. Now, keep in mind that she never had any

problems, she's always

been on the 90 percentile (thanks probably to

enzymes and lots and lots of

food!). She is on a very low fat diet, and most of

your CF doctors will

tell you that is a big no no. In Shantell's case,

the fat was making her

very sick, her body just can't handle cheese, milk,

grease or foods high in

fat. Believe me, I tried because of the the CF

doctors told me we had

to. Instead, she eats the foods that don't make her

feel bad, are easy to

digest and keep her nutrition up (grilled chicken

breast with no skin,

cantelope, cheerios, yogurt no fat ect.). The

enzymes are to break down

the fat, you don't need them when you eat no fat.

If you eat an apple, you

don't need an enzyme. There are certain kinds of

fat that you do need the

enzymes for. Because Shantell eats very little fat,

because she isn't

growing anymore, then her need for enzymes has

decreased. Remember that

adult CF is not cut and dry, that it is basically

all experimental.

=====

, Mommy Of The Great!

__________________________________________________

[Guest guest]

Yeah, I guess some people don't (need enzymes) but I am sure more probably

do need them than don't. anyway, interesting subject.

love,

M

[Guest guest]

,

Thanks for the info. Have you ever heard of a sinuneb? I have also been told

that too about reinfecting yourself when you use it again without sterilizing

it. Like tooth brush I put them in the dishwasher because it will sterilize

thinks much better then by hand. Yes, I do live in the USA. I live in Iowa.

Deb

[Guest guest]

I seem to remember hearing about the sinuneb,

similar to a nebulizar but the mask goes over the sinuses, correct? Do you

know if this gives the irrigation needed, and is reinfection a possibility still

since you are using the same hose and tubing? So far, Shantell is doing

remarkable since we started using the disposable treatments. Before this,

they were talking about another surgery, more extensive than the last with

possible facial deformation. I'm always open to new treatments and

suggestions, so if you have info on sinuneb, you can share with everyone.

We all have to make our own determinations on what works best. The

disposable syringes cost about 25 cents each. The saline and medication is

covered by our insurance, so it's pretty cost efficient at this point in

time. Never been to Iowa, although my company flys there. It's gotta

be cooler than Arizona!

, mom of Shantell 19yr wcf

Re: and

and

,

Thanks for the info. Have you ever heard of a sinuneb? I have also been

told

that too about reinfecting yourself when you use it again without

sterilizing

it. Like tooth brush I put them in the dishwasher because it will sterilize

thinks much better then by hand. Yes, I do live in the USA. I live in Iowa.

Deb

PLEASE do not post religious emails to the list.

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

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 don't know a whole lot about the sinuneb yet I am still finding out more

about it through my daughters doctor. Let me see if I can find the web site

for it because that is where I found out a lot about it. Deb <A

HREF= " http://www.sinuspharmacy.com/ " >Treating Sinus Infection, Sinusitis, and

Sinus Problems</A> Here it is I hope this helps