RE: Emma's appointment and Pancrecarb

[Guest guest]

Please go to DCI web page & ask for those papers. I am meeting with the

owner & honcho of DCI this next week on another issue, & will ask him also

for those facts. The gentleman who developed Pancrecarb is Dr Siboris. He

also did PANCREASE when he was with McNEIL (now known as

ORTHO -MCNEIL)....He went on his own with it & with Bill Humphries & it has

been extremely successful. I do so very much encourage you to seek that

info ..... Please give me an address to send such info .----If he has it &

?tell you where to get it .. Bless you . I am so sorry it is being so hard

to pinpoint .

LOVE & HUGS, GrandmomBEV

Emma's appointment and Pancrecarb

Hi Gale,

I didn't respond yesterday because I was falling asleep at the computer

and thought it best to call it a night. Anyway, Emma did real well at

her appointment weight wise. She is now 29 pounds which is over the 50th

percentile and she is over 25 percent in height as well. I tried to

convince them to try pancrecarb because of her reflux but his

recommendation was to try mucomyst first. The rational being that at her

last appointment they did a chest Xray and for the first time noticed

inflammation in her lungs, nothing serious but they want to put her on

mucomyst to thin her mucus. He indicated that this extra mucus may

actually be contributing to her vomiting during meals and if this

relieves the problem then we won't have to switch her enzymes. He

indicated that they had actually run some studies at CHOP involving

Pancrecarb and found it didn't have a great absorption rate. I told him

that since she is over the 50th percentile that my concern at this point

is more the quality of her day to day living than if she doesn't absorb

as well. She has a very negative association with eating that may never

go away. The sooner we can relieve some of the side affects of the acid

reflux, I think the better her long term prognosis because her health is

dependent upon her wanting to eat. Right now, I can force the issue a

little but the older she gets, the less control I will have. He seemed

to understand where I was coming from but he still wants to see if the

mucomyst affects anything first. He said even then he would want to

discuss it with her GI doctor (who already said no). I am going to try

and see if I can find some articles or studies regarding Pancrecarb and

acid reflux. He indicated he wasn't aware of any.

Since she is doing so well, weight wise, we're going to make one of her

meals more of a feed yourself setup with regular solid foods as she is

still eating pureed table foods at the moment. I really want her to

start eating entirely by herself. It's tiring feeding her four meals a

day. She spoon feed herself a whole thing of applesauce this morning

which she has never done before. Of course, she immediately proceeded to

vomit it all up but it's the fact that she tried that counts.

The fun part of the appointment was when Emma decided to forcibly push

Isabelle (who is 2 years older) off a chair they were both sitting on.

Isabelle proceeded to go flying forwards and smacked her chin on the desk

in front of her which then caused her head to whip back and she smacked

the back of her head on the chair as her little body went crumpling to

the floor. Boy did she cry. Both the doctor and nurse were in the room

when it happened and were witness to Emma's bad behavior. I was so

embarrassed. I didn't know how to reprimand her in front of them.

Normally, she would have been in the corner. Needless to say, she got

away with it. I did reprimand her. I never would have thought the

younger one would be the bully but Emma is really hard on Isabelle. She

is a really good kid most of the time, she never cries at any of her

doctor appointments only for tests and even then only a little. It's

just hard to watch her beating up her big sister.

Anyway, thanks for asking. Talk to you later,

- mom to Emma 2 years old w/cf and Isabelle 4 years old wo/cf

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[Guest guest]

Hi ,

do I get that right, that your doc prescribed oral mucomyst to thin

Emma's mucus in the lung? Well, that's interesting that your doc

worries about absorption rates of Pancrecarb but is sure that the

mucomyst will make it from the stomach to the lungs. Here in Germany

they plan to stop insurance coverage of n-acetylcystein (generic for

Mukomyst) because there is no proof that it ever gets to the lung in

normal people. Given the metabolic problems in pwcf I doubt if it

will help to thin the mucus at all.

Fiona takes Mukomyst for five years now, because it is standard

treatment here for pwcf to prevent intestinal blockages. And for

those, who can stand the smell it may work as an INHALABLE mucus

thinner. So I hope that it will somehow help Emma's digestion.

If your doc relies on scientific proves one has to think that he has

some data that shows, that oral mukomyst really gets into the

airways. I would be interested in such data.

Peace

Torsten, dad of Fiona 5wcf

> Hi Gale,

>

> I didn't respond yesterday because I was falling asleep at

the computer

> and thought it best to call it a night. Anyway, Emma did real well

at

> her appointment weight wise. She is now 29 pounds which is over

the 50th

> percentile and she is over 25 percent in height as well. I tried to

> convince them to try pancrecarb because of her reflux but his

> recommendation was to try mucomyst first. The rational being that

at her

> last appointment they did a chest Xray and for the first time

noticed

> inflammation in her lungs, nothing serious but they want to put her

on

> mucomyst to thin her mucus. He indicated that this extra mucus may

> actually be contributing to her vomiting during meals and if this

> relieves the problem then we won't have to switch her enzymes. He

> indicated that they had actually run some studies at CHOP involving

> Pancrecarb and found it didn't have a great absorption rate. I

told him

> that since she is over the 50th percentile that my concern at this

point

> is more the quality of her day to day living than if she doesn't

absorb

> as well. She has a very negative association with eating that may

never

> go away. The sooner we can relieve some of the side affects of the

acid

> reflux, I think the better her long term prognosis because her

health is

> dependent upon her wanting to eat. Right now, I can force the

issue a

> little but the older she gets, the less control I will have. He

seemed

> to understand where I was coming from but he still wants to see if

the

> mucomyst affects anything first. He said even then he would want to

> discuss it with her GI doctor (who already said no). I am going to

try

> and see if I can find some articles or studies regarding Pancrecarb

and

> acid reflux. He indicated he wasn't aware of any.

>

> Since she is doing so well, weight wise, we're going to make

one of her

> meals more of a feed yourself setup with regular solid foods as she

is

> still eating pureed table foods at the moment. I really want her to

> start eating entirely by herself. It's tiring feeding her four

meals a

> day. She spoon feed herself a whole thing of applesauce this

morning

> which she has never done before. Of course, she immediately

proceeded to

> vomit it all up but it's the fact that she tried that counts.

>

> The fun part of the appointment was when Emma decided to

forcibly push

> Isabelle (who is 2 years older) off a chair they were both sitting

on.

> Isabelle proceeded to go flying forwards and smacked her chin on

the desk

> in front of her which then caused her head to whip back and she

smacked

> the back of her head on the chair as her little body went crumpling

to

> the floor. Boy did she cry. Both the doctor and nurse were in the

room

> when it happened and were witness to Emma's bad behavior. I was so

> embarrassed. I didn't know how to reprimand her in front of them.

> Normally, she would have been in the corner. Needless to say, she

got

> away with it. I did reprimand her. I never would have thought the

> younger one would be the bully but Emma is really hard on

Isabelle. She

> is a really good kid most of the time, she never cries at any of her

> doctor appointments only for tests and even then only a little.

It's

> just hard to watch her beating up her big sister.

>

> Anyway, thanks for asking. Talk to you later,

>

> - mom to Emma 2 years old w/cf and Isabelle 4 years old wo/cf

>

>

>

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