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Our cf doc says we should follow what our GI doc says since we have

had such a difficult time trying to adjust Zach's enzymes.

I have to call the GI doc again today anyway. We are finding it

impossible to give Zach his previcid. He is to get 30 ml of syrup

each morning. It is hard to get a baby to take that much medicine.

I can't give it to him by syringe because the beads block the tip,

so Zach must drink it. He takes two sips and stops. I am hoping

they can give me the previcid that can be put in applesauce.

Sara

> >   > I think you are right Sara. Have they tried several different

> >   types

> >   > of enzymes as well as doses? The greasy stuff is not normal.

What

> >   > makes themthink he is pancreatic sufficient? (Sorry if I

missed

> >   this

> >   > info. I may have skipped over it during my hiatus)

> >   > Lenora

> >   >

> >   > >Hi Everyone,

> >   > >Zach's cf doc agreed with his GI doc to try going without

enzymes

> >   to

> >   > >see if Zach could be pancreatic sufficient.  We won't have

the

> >   > >elastase stool test results for two weeks.  This morning

Zach had

> >   a

> >   > >normal sized formed brown bowel movement and an enormous

amount of

> >   > >oil in his diaper.  I called the GI doc to tell him I was

going to

> >   > >give him enzymes again and his nurse said the GI doc

preferred

> >   that

> >   > >he not be on enzymes, but it was ok to try them again.  I

am so

> >   > >confused.  What is this oil if it is not fat

malabsorption?  I

> >   have

> >   > >a strong suspicion that Zach is pancreatic insufficient and

we

> >   just

> >   > >haven't found the right dosage or right enzymes yet.

> >   > >Sara - mommy of Zach 20 months

> >   > >

> >   > >

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Sara,

My son is 21 months old, he has been on a liquid prevacid since leaving the

NICU. The only thing we do is have it flavored at the pharmacy, and give it

to him in an oral syringe.

Our Prevacid in " Suspension " does not have beads. It is really chalking, and

we shake it up until the chalk in the bottom re-dissolves in the liquid.

Mike - Son 21 months w/CF

_____

From: dwson2

Sent: Thursday, October 30, 2003 7:41 AM

To: cfparents

Subject: Re: Sara

Our cf doc says we should follow what our GI doc says since we have

had such a difficult time trying to adjust Zach's enzymes.

I have to call the GI doc again today anyway. We are finding it

impossible to give Zach his previcid. He is to get 30 ml of syrup

each morning. It is hard to get a baby to take that much medicine.

I can't give it to him by syringe because the beads block the tip,

so Zach must drink it. He takes two sips and stops. I am hoping

they can give me the previcid that can be put in applesauce.

Sara

..

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Sara,

Ask your doc to prescribe the " suspension " liquid Previcid. That's what

we give Ellie and it works great. There are no beads so you can give it

with a syringe. You just have to make sure you shake it really good

before each use. Ellie actually loves the taste of it...she gets

excited when I pull it out of the fridge.

Re: Sara

Our cf doc says we should follow what our GI doc says since we have

had such a difficult time trying to adjust Zach's enzymes.

I have to call the GI doc again today anyway. We are finding it

impossible to give Zach his previcid. He is to get 30 ml of syrup

each morning. It is hard to get a baby to take that much medicine.

I can't give it to him by syringe because the beads block the tip,

so Zach must drink it. He takes two sips and stops. I am hoping

they can give me the previcid that can be put in applesauce.

Sara

> >   > I think you are right Sara. Have they tried several different

> >   types

> >   > of enzymes as well as doses? The greasy stuff is not normal.

What

> >   > makes themthink he is pancreatic sufficient? (Sorry if I

missed

> >   this

> >   > info. I may have skipped over it during my hiatus)

> >   > Lenora

> >   >

> >   > >Hi Everyone,

> >   > >Zach's cf doc agreed with his GI doc to try going without

enzymes

> >   to

> >   > >see if Zach could be pancreatic sufficient.  We won't have

the

> >   > >elastase stool test results for two weeks.  This morning

Zach had

> >   a

> >   > >normal sized formed brown bowel movement and an enormous

amount of

> >   > >oil in his diaper.  I called the GI doc to tell him I was

going to

> >   > >give him enzymes again and his nurse said the GI doc

preferred

> >   that

> >   > >he not be on enzymes, but it was ok to try them again.  I

am so

> >   > >confused.  What is this oil if it is not fat

malabsorption?  I

> >   have

> >   > >a strong suspicion that Zach is pancreatic insufficient and

we

> >   just

> >   > >haven't found the right dosage or right enzymes yet.

> >   > >Sara - mommy of Zach 20 months

> >   > >

> >   > >

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; great advice all of it; we have always been told

the same thing about me and our child wcf--and we both

take Beta Carotene in giant amounts!

Love to you, Santosh, Leela and Suresh,

n Rojas

Rojas5915@...

Re: oily stools again

>

>

> The GI doc seems to think that his gene mutations could indicate

> pancreatic sufficiency and his fecal fat stool test was really low.

> I think I have figured out why the fecal fat stool test may have

> been unusually low. They told me to collect the stool for 72 hours

> in a container. By removing his stool from the diaper, I think I

> was removing the stool but not the fat. The fat is absorbed into

> the diaper. I might need to bring this to the GI docs attention.

> It was done before we started seeing him.

> We have tried Ultrase and now we are on Pancrecarb. We used

> anywhere from one enzyme per meal up to six. We have been

> increasing and decreasing enzymes for eight months.

> Zach's cf doc says that 90% of the time patients start enzymes and

> the problem is fixed. Zach has had either all yellow mushy poop or

> formed poop with lots of oil. He has gone from the 10 pecentile for

> weight in August to 5th pecentile in October. He just can't gain

> weight unless he is on antibiotic for an ear infection. Then when

> he goes off the antibiotic he loses the weight he gained. Weird.

> He will be getting tubes in his ears soon, so hopefully no more ear

> infections.

> It is all so confusing. Hopefully the test results will come back

> quickly.

> Sara

>

>

> > I think you are right Sara. Have they tried several different

> types

> > of enzymes as well as doses? The greasy stuff is not normal. What

> > makes themthink he is pancreatic sufficient? (Sorry if I missed

> this

> > info. I may have skipped over it during my hiatus)

> > Lenora

> >

> > >Hi Everyone,

> > >Zach's cf doc agreed with his GI doc to try going without enzymes

> to

> > >see if Zach could be pancreatic sufficient. We won't have the

> > >elastase stool test results for two weeks. This morning Zach had

> a

> > >normal sized formed brown bowel movement and an enormous amount of

> > >oil in his diaper. I called the GI doc to tell him I was going to

> > >give him enzymes again and his nurse said the GI doc preferred

> that

> > >he not be on enzymes, but it was ok to try them again. I am so

> > >confused. What is this oil if it is not fat malabsorption? I

> have

> > >a strong suspicion that Zach is pancreatic insufficient and we

> just

> > >haven't found the right dosage or right enzymes yet.

> > >Sara - mommy of Zach 20 months

> > >

> > >

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I talked to the pharmacy and they said the packets are used to make

the suspension liquid. I misunderstood and thought I need to use a

whole packet. He only needs a half packet. The nurse said to

divide the medicine as evenly as we can and give it to him in one

tablespoon. I think this is going be to ok. Zach will drink that

much. If he won't drink it I can spoonfeed it to him.

I thought for sure there would be an alternative but the nurse said

that is the way this GI doc always prescribes Previcid and she

doubts that he would do it a different way. I think I can make it

work though.

Sara

> > >   > I think you are right Sara. Have they tried several

different

> > >   types

> > >   > of enzymes as well as doses? The greasy stuff is not

normal.

> What

> > >   > makes themthink he is pancreatic sufficient? (Sorry if I

> missed

> > >   this

> > >   > info. I may have skipped over it during my hiatus)

> > >   > Lenora

> > >   >

> > >   > >Hi Everyone,

> > >   > >Zach's cf doc agreed with his GI doc to try going without

> enzymes

> > >   to

> > >   > >see if Zach could be pancreatic sufficient.  We won't

have

> the

> > >   > >elastase stool test results for two weeks.  This morning

> Zach had

> > >   a

> > >   > >normal sized formed brown bowel movement and an enormous

> amount of

> > >   > >oil in his diaper.  I called the GI doc to tell him I was

> going to

> > >   > >give him enzymes again and his nurse said the GI doc

> preferred

> > >   that

> > >   > >he not be on enzymes, but it was ok to try them again.  I

> am so

> > >   > >confused.  What is this oil if it is not fat

> malabsorption?  I

> > >   have

> > >   > >a strong suspicion that Zach is pancreatic insufficient

and

> we

> > >   just

> > >   > >haven't found the right dosage or right enzymes yet.

> > >   > >Sara - mommy of Zach 20 months

> > >   > >

> > >   > >

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  • 1 year later...
Guest guest

Sara,

SOOOOO FUNNNNNY!!

Yes, let me try that to see what happens..I guess I would return to

my pink slip...(haha)

Sounds like you are getting better day by day! I can't wait to see

our final results a few months from now! If I ever get a chance I

will try to post some pre-op pictures! You are going to say boy that

woman sure needs some help...(haha)

Back to Work!!

> > > Connie,

> > >

> > > you are too funny! of course you're welcome to come and visit

in

> > > Italy. Hopefully by then I'll have moved back. My fiancee and

I

> > are

> > > just itching to get our life together started.

> > >

> > > I'm glad the pics helped visually. I understand what you mean.

> I'm

> > > visual too. I'll try to post another post-op pic of me today.

And

> > it

> > > does help to have the family supporting you in all of this. My

> mom

> > > stayed with me in the hospital and I wouldn't have had it any

> > other

> > > way, even though I know I could have managed fine without her

but

> > > having family close by is always good.

> > >

> > > Right, I've been on the computer for a little too long this

> > morning

> > > and can feel my jaw straining already. Time for a break. I'll

> post

> > > more later.

> > >

> > > Sara

> > > PS I liked the insight into the life and work of nurses and

the

> > great

> > > doctor lousy husband story :-) a good sense of humour will

help a

> > lot

> > > in getting through this surgery. My doctor keeps on telling

me,

> > you

> > > must keep a positive attitude. You are not a deathly ill

person

> > you

> > > are someone whose jaw is " under construction " !

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