RE: ?'s about Enzymes/Pancreatic Insufficiency----WELCOME BACK..........

[Guest guest]

Hi there , nice to see you back on line. I am so sorry to hear of the

problems.

That is a very lowest dose of the Pancrecarb....... the number gets larger

as the dose does too.

Hopefully things with the dear CADEN & CARSEN will level out & you'll all

be back on track.

Some wee ones are not DX with CF at the earlier age, Then later on they

retest & are CF . Soooooo, I am very happy they are working so diligently on

the Dx for you all.

Stay with us as many of the same treatments may apply .

Take care of you & welcome back

LOVE & HUGS< GRANDMOMBEV

?'s about Enzymes/Pancreatic Insufficiency

Hello,

I haven't posted for some time here.

We were going through some CF testing in our son, Caden in 2002 and was

made very welcome here. Sweat test and DNA were neg. so the CF thought was

dropped We just got home from Mayo Clinic Sat.night for further studies on

his condition. He has a fatty acid oxidation disorder as does my newest

addition, Carsen who is 8 mths old.

Caden was diagnosed with Pancreatic Insf.

Severe case.. as there are little to NO enzymes being produced. He was put

on Pancrecarb.

We will start him on them tomorrow.

I'd like to know more about them and what to expect. Even though he

doesn't have CF, he has a severe case of Panc.Insf that has robbed him of 5

yrs of his child hood. I am hoping that he will make a quick turn around

after starting them. He has all of the typical symptoms of Panc.Insf. so I'm

sure you know what to comment on. I'd also like to know a little more about

what to expect as far as prognosis goes for Panc. Insf. Does this shorten

ones life span?

How on Earth has he gone sooo long undiagnosed? He is super thin and is

wasting away with dark circles under his eyes. He wants to eat every 30

minutes with NO weight gain. He has to poop almost every time he eats!

Surprisingly, his vitamin levels were in the normal range! I think maybe

he's had some function up until just recently because late 2003 he has taken

a dramatic turn for the worse.

I love to hear from anyone who has some good information on this subject.

Are there any complications from having this condition?

Long term side effects from using enzymes?

How do you feel Pancrecarb works for your child? He will be taking

Pancrecarb MS4.

I understand this may be a low dose???

I guess they want to see how he reacts.

The dr said he has a global Panc. Insf. meaning all enzymes are not

working.

Thank you so very much for helping!

Krystena s

Caden 5 yrs Glutaric Aciduria II & possibly MCAD

Carsen 8 mths Glutaric Aciduria II & possibly MCAD, fatty liver